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Full text of "Walking with storms: lesbians in AIDS work"

Walking with Storms: 
Lesbians in AIDS Work 
By 
Jennifer L. Walters 

A Project/Thesis Submitted 
to the Faculty of the 
Episcopal Divinity School 
in Partial Fulfillment 
of the Requirements 

for the Degree 

DOCTOR OF MINISTRY 

April 15, 1990 




Carter He 



, Advisor 



Katie Geneva Cannon, Reader 



Suzanne R. Hiatt, Reader 



This is dedicated to the 

thirty-four lesbians whose experiences 

are documented here and to 

those they have touched. 



I was to walk with the storm and hold 
my power, and get my answers to life 
and things in storms. The symbol of 
lightning was painted on my back. 
This was to be mine forever. 

— Zora Neale Hurston 



k From Dust Tracks on a Dirt Road, Philadelphia: Lippincott Co., 
1942; reprint. New York: Lippincott. 



CONTENTS 

Acknowledgements i 

Introduction 1 

I. The Gay and Lesbian Liberation Movement 5 

II. The AIDS Epidemic in the United States 33 

III. Methodology and Study Design 51 

IV. Results and Discussion 59 

v. AIDS Work and Liberation 115 

Endnotes 124 

Bibliography 130 



Acknowledgements 

I am indebted beyond expression to the women and men I 
have come to know through my work as an HIV testing counselor 
at the Fenway Community Health Center in Boston. The clients 
and the staff have been a wellspring of courage and hope. 
At the Fenway I have learned about love in the service of 
justice and humor in the service of love. These are great 
gifts. I would especially like to thank my co-workers in the 
Community Services Department for their support and patience 
during this project. 

There have been numerous "sister-companions" that have 
sustained my work and spirit during the last six years. 
I would like to thank Gail Beverley and Heidi Hunt for 
field trips, both physical and spiritual and Martha Moon for 
her gentle support and daily doses of Southern hospitality. 
Brothers Lee Ellenberg, Daniel Reid and Scott Saltzman have 
provided support and guidance along the way. 

My sisters in the Boston Women's AIDS Information 
Project, Women's AIDS Network and the lesbian support group 
have shared friendship and struggles with the contradictions 
of race, class and sex in the HIV/AIDS epidemic. I would 
like to thank Beverly Smith, Maryalice Guilford, Vicky Nunez, 
Genita Ekpenyong, Dianna Christmas, Berit Pratt, Janice 
Irvine, and Shoshana Rosenfeld for their contributions in 
that regard. 

My fellow students and feminist theological companions 

i 



have offered innumerable insights and suggestions as this 
project took shape. My colleagues at the Episcopal Divinity 
School: Myke Johnson, Hea Sun Kim, Linda Suzuki and Sue 
Hiatt offered valuable insights in the formation of my thesis 
proposal. Diane Moore and Judy Dorney contributed to the 
design of the survey and helped me over methodological 
hurdles . 

Edith Rosenthal was a primary source of encouragement 
and practical strategies for writing the thesis when my AIDS 
"job" encroached on this AIDS "work." 

Linda Roach, poet, friend and theologian has been a 
centerpoint for my AIDS work and theological endeavors. Her 
gifts to me are immeasurable. The friendship of Mary Bowe, 
Diane Teubner and Kathy Scanlan have been refreshment and 
necessary food for this journey. 

Lisa Price, Ryann Price McQuilton, Cady and Bo created 
a peaceful, loving home in the midst of chaos and never let 
me take myself too seriously, or sleep too late -- necessary 
gifts, indeed. The friendship of Carol Dittes, Judy Heiman 
and Martha Plusquellec kept my feet planted on the ground. 
Barbara Du Bois and Maria Wiener have been important 
companions and spiritual healers. The love and friendship 
of Kathy Williams has challenged me to a depth of 
intellectual and personal honesty that I could not have come 
to without her. 

I have the deepest gratitude and respect for my 

ii 



teachers Katie Geneva Cannon, Carter Heyward and Beverly 
Wildung Harrison. I am Inspired by their integrity and 
energized by their brilliance. Their insights and support 
have made all the difference. I am especially grateful to 
Carter for her personal support and confidence. 

Finally, I would like to thank my partner, lover, and 
best friend, Alexandra Sciaky, whose love gives me strength 
and reveals God's face every day of our lives. 

While the contributions of these people to the 
development and outcome of this thesis have been substantial, 
any shortcomings or errors of interpretation or accuracy in 
this work. 



iii 



Introduction 

I wish I had kept a journal. There Is a saying 
that one year In human terms, feels like seven to a dog. 
That Is how time has felt since I've been Involved In AIDS 
work. When I began working at the Fenway Community Health 
Center — a small Boston gay and lesbian clinic — the AIDS 
Action Committee had just hired its first two staff people. 
The committee was located in an old storage room In the 
basement of an apartment building adjacent to the health 
center. The health center's own financial status was bleak; 
the business manager was predicting doom. The explosion of 
the AIDS epidemic catapulted the Fenway Community Health 
Center and the gay community throughout the U.S. into 
a whole new and complex array of problems. The Boston 
AIDS Action Committee now has nearly 100 employees and 
hundreds of volunteers. The health center has a healthy 
multi-million dollar budget and a new building under 
contruction. 

The AIDS epidemic has brought societal contradictions 
into brilliant painful clarity. It is distressing to think 
that the virus which has taken the lives of friends and 
colleagues also has spawned a whole Industry which, In part, 
is responsible for the economic health of what was once a 
little gay and lesbian health center and, which pays my rent. 
AIDS work is compelling, difficult, and exhilarating. And I 
have often been at a loss to explain my love for it. That Is 
why I wish I had kept a journal. And that is the motivation 



behind this thesis. I want to learn why other lesbians do 
AIDS work and what It means to them. 

This thesis project begins to document the 
contributions and concerns of lesbians working in AIDS. It 
emerges out of the same part of me that could not keep a 
journal. Many times I have asked myself why I have been 
involved in this work, why It is so compelling even in the 
midst of sadness and why it drew me back into theological 
study. How does my own experience of AIDS connect with those 
of other lesbians, in different places, and with other women? 
What does it mean that I scour the obituaries for traces of 
clients I haven't seen in a while and I am consoled that 
people continue to die of old age. I developed this thesis 
project -- a survey of lesbians employed in AIDS-related work 
— in order to find out how other lesbians answer the 
questions I have struggled with these last six years. 

Other aspects of my social location and experience 
Influence my perspective on this study. The bulk of my AIDS 
work has been with individual adult men and women making 
decisions and coping with HIV antibody test results. I am 
theologically, but not medically trained. My relationships 
with clients usually last no longer than three weeks, during 
which we spend a total of an hour talking about the test and 
the results. 

I came out as a lesbian two years prior to entering 
AIDS work. I believe the work has radically altered my 
relationship to gay men with whom — inspite of the battles 



over sexist, classist attitudes and beliefs — I am firmly in 
solidarity. Along with women, gay men are my people, in so 
far as I know about their concerns, community values and 
fears . 

I was raised Roman Catholic in a working class home and 
attended Catholic schools from 1965 to 1984. I feel a strong 
cultural identification with Catholics, but am no longer 
affiliated with the Roman church. I have theological roots 
in the Christian ethic of love and in the liberation analysis 
of justice. I have a mixed ethnic heritage and identify 
strongly with my Puerto Rican roots, but was taught to deny 
them. All of these things shape my frame of reference. 
Doing AIDS work has expanded that framework and I hope that 
it has helped me to see more clearly the network of privilege 
and oppression. 

I find that a feminist liberation theological framework 
requires a high degree of intellectual honesty. And for that 
reason, I find it very challenging. Liberation theology and 
ethics seeks to identify oppressive power dynamics in order 
to develop analysis and work for justice or right relation. 
The insights, concerns and wisdom of those who live in the 
margins of society are primary sources of authority about 
social power relations. In the AIDS epidemic, those who are 
at highest risk for infection populate the outer rings of 
U.S. society: gay men, African American and Latina women, 
intravenous drug users, immigrants, the poor and 
disenfranchised . 



Among those who work In AIDS organizations, lesbians 
occupy the margins. In the gay community, communities of 
color and in the health care industry, the contributions of 
lesbians to the work against AIDS goes unacknowledged. Gay 
male visibility as people living with AIDS and as "heroes" of 
the epidemic does not expiate lesbian invisibility in every 
sector of AIDS work. To do feminist liberation theology Is 
to be in relationship with the contradictions and tensions 
which arise in taking one's own privilege as seriously as 
one's oppression. This Is my attempt to learn from and give 
voice to lesbians of every race, ethnicity and religious 
heritage who have chosen to walk with this storm. 

Etty Hillesum, a young Jewish woman, lived In Amsterdam 

during the German occupation from 1941 - 1943. Even as the 

Nazis began to cart Jews, gypsies and homosexuals off to 

Auschwitz, Etty continued to document her own, very personal, 

experience amidst the social and political atrocities taking 

place around her. Her memoirs serve as a reminder that this 

effort to beari witness to lesbian experience in the midst of 

AIDS is a crucial part of the work for justice. 

So many of our most promising, vigorous 
young men are dying day and night. I 
don't know how to take it. With all the 
suffering there is, you begin to feel 
ashamed of taking yourself and your moods 
so seriously. But you must continue to 
take yourself seriously, you must remain 
your own witness, marking well everything 
that happens In this world, never shutting 
your eyes to reality. You must come to 
grips with these terrible times, and try to 
find answers to the questions they pose. 



CHAPTER ONE: The Gay and Lesbian Liberation Movement 

Lesbians have been on the frontlines of AIDS since 

the beginning. As mothers and sisters of those first to die 

in the early 1980s, as the nurses and others who cared for 

1 
them, as friends and lovers, and as women with HIV/AIDS 

themselves, lesbians have been involved in every aspect of 
HIV/AIDS care, prevention, research, administration, advocacy 
and activism. Most lesbians who became involved early in the 
epidemic either had existing ties with gay men in the 
movement for gay liberation in the 1970s or were involved in 
health care. Lesbians' participation in AIDS work and the 
AIDS movement is best understood in light of their 
involvement in the movements for gay and women's liberation, 
leading up to the eruption of HIV/AIDS in the 1980s. 

In this chapter I will outline the development of the 
movement for gay liberation and touch on its relationship 
with other movements for social change during the last forty- 
five years. What follows is not a socio-political history, 
but merely a foundation for understanding lesbians' 
relationship to gay men, politics and the AIDS/HIV epidemic. 

The Evolution of a Homosexual Community: 1940 - 1960 

In the United States, the modern gay and lesbian 
liberation movement was unintentionally launched by the 
Second World War which "created substantially new erotic 



opportunltes that promoted the articulation of a gay Identity 

2 
and rapid growth of a gay subculture." World War II pulled 

thousands of men and women from their homes into a variety of 

sex-segregated non-familial institutions. For some, wartime 

careers were an opportunity to live and love in ways they had 

already chosen. For others, they presented an occasion to 

act on desires that had previously gone unacknowledged. In 

preferentially inducting unmarried, young, childless men and 

women, the armed forces created, inadvertently, a 

disproportionately large homosexual membership. For some 

lesbians who remained in civilian life, the war brought 

opportunities to achieve a college education, enter the 

workforce and potentially gain a measure of economic 

3 
independence from men and the institution of marriage. 

Although a disease model for understanding 

homosexuality predominated through the 1970s, it had 

undergone a major reformulation as Freudian theories gained 

preeminence after World War I and the military began using 

psychiatrists during World War II to screen out homosexual 

recruits. Throughout the 20th century, the medical 

profession's interest in the causes and cures of 

homosexuality perpetuated the characterization of gays and 

lesbians as sick. However, this interest in curing 

homosexuals also initiated scientific research into the 

experience of homosexuality. The most influential study of 

American sexuality, Alfred Kinsey's Sexual Behavior In the 

Human Male , was published in 1948. 



More than any single research study, Kinsey's report 

changed middle-class America's perceptions of sexual 

behavior. Kinsey's researchers carefully interviewed 10,000 

white American men and women and recorded their sexual 

histories. The report uncovered an incidence of male 

homosexual behavior that dwarfed previous estimates. Among 

males, it was found that 50 percent admitted erotic responses 

to their own sex, 37 percent had had at least one 

post-adolescent homosexual experience leading to orgasm, and 

four percent were exculusively homosexual throughout 

adulthood. Among women, the study showed that 28 percent 

responded erotically to their own sex, and 13 percent had 

experienced organsm with another woman. Kinsey felt 

compelled to comment on these astonishing findings: 

Persons with homosexual histories are to be 
found in every age group, in every social 
level, in every conceivable occupation, in 
cities and on farms, and in the most remote 
areas of the country. (4) 

For U.S. homosexuals, Kinsey's report helped to 

erode isolation and to create a sense of belonging to a 

group, however invisible. Kinsey, himself, used the 

statistics to opine that society should not condemn such a 

common sexual activity. Among the white heterosexual 

majority, however, a contradictory view of the statistics 

arose. Homosexuality was viewed as a larger problem and a 

greater threat to society than previously thought. On the 

heels of the Kinsey study, the white male power structure in 

the U.S. propagated the belief in a "homosexual menace" which 



allegedly endangered nationally security and society at 

5 
large. The "anti-homosexual Impulse" In U.S. society 

gathered strength In the 1950s. The McCarthy era initiated a 

hunt in the military and other government institutions for 

homosexual people who, when discovered, were often publicly 

accused, harassed and then coerced into exposing homosexual 

friends and colleagues. 

Despite the intensified persecution that followed, by 

revealing that millions of Americans exhibited a strong 

erotic attraction to members of the same sex, the Kinsey 

reports implicitly encouraged gay men and lesbians to accept 

their Inclinations and to seek out others like themselves. 

Kinsey' s work gave an added push to the emergence of a gay 

urban subculture and supplied ammunition to the gay and 

6 
lesbian fight for justice. 

Gay men and lesbians were fair game along with 

Communists in the political witch hunts that characterized 

the McCarthy era. This fueled distrust and paranoia among 

many gay men and lesbians who feared the lengths to which the 

FBI might go to harass them. Audre Lorde described the 

atmosphere during that period: 

You never could tell who was who, and the 
protective paranoia of the McCarthy years 
was still everywhere outside of the 
mainstream of blissed-out suburban middle 
amerlca. Besides, there were always 
rumors of plainclothes women circulating 
among us looking for gay-girls with fewer 
than three pieces of female attire. That 
could get you arrested for transvestism, 
which was illegal. Or so the rumors went. (7) 

Despite a political environment that inhibited social 



change, a small group of homosexual men with ties to the 

Communist Party formed the Mattachine Society in Los Angeles 

in 1951. The name came from a discussion among the founders, 

Harry Hay and John Gruber, about "mattachines, " mysterious 

masked mediaeval figures whom Hay speculated might be 

8 
homosexual. 

[The Society] affirmed the uniqueness of 
gay identity, projected a vision of a 
homosexual culture with its own positive 
values, and attempted to transform the 
shame of being gay into a pride in 
belonging to a minority with its own 
contribution to the human community. (9) 

The Society adopted its own secret organizational structure 

that allowed members to participate with relative safety from 

disclosure . 

During the 1950s men's relationships were mostly 

confined to sexual encounters, and lesbians tended to be 

isolated with few lesbian acquaintences . Members held 

discussions which scrutinized homosexual life and gave gay 

men and lesbians a positive alternative to the traditional 

10 
patterns of gay life at the time. The Mattachine 

Society portrayed itself as an organization for both men and 

women. The reality, however, is that it attracted a 

predominantly male membership. A few women held leadership 

positions, but their concerns, which often differed from the 

men's, were trivialized. The male leadership often defined 

gayness and gay concerns in ways that negated lesbian 

experience. This alienated many lesbians who sought other 

ways to organize a lesbian movement. 



To live out a commitment to lesbianism — an experience 

of primary sexual and emotional attachment to women -- 

required a much sharper break from traditional notions of 

11 
womanhood than did the corresponding choice for men. 

Lesbians had access to fewer economic resources and societal 

protections than gay men. They also often remained 

married to raise their children while maintaining secret 

relationships with women. Their sexual and emotional 

affiliations threatened their claims to their children, jobs 

and financial resources. In most communities, living in the 

open as a lesbian had potentially disasterous social results. 

Few women, therefore, had the personal and economic resources 

to risk involvement in a gay-identified movement for civil 

rights or societal recognition. While the Mattachine Society 

attempted to incorporate a diverse membership, this period in 

the history of the modern gay and lesbian rights movement is 

remarkable for the nearly complete Invisibility of lesbians 

and people of color. For lesbians and gay men of color, 

political activism for homosexual rights was secondary to 

fighting for basic rights for women and African Americans in 

the United States; and the gay leadership made minimal 

efforts to include them. 

Two white middle-class lesbian members of the 

Mattachine Society, Phyllis Lyon and Del Martin, began to 

address the distinct concerns of lesbians within the movement 

for gay liberation by starting the Daughters of Bilitis (DOB) 

1955. DOB existed as a self-help organization for women to 

10 



gain a sense of their identity, receive support and help 

other women. Through the publication o£ the Ladder , DOB's 

newsletter, lesbians, who were otherwise Isolated, could 

receive information and support. Membership in this new 

organization was small, and remained so throughout its life. 

DOB was created to give lesbians an opportunity to learn from 

each other and create community from the ground up. 

Before DOB, lesbian bars were the only public 

manifestation of lesbian culture. Even so, due to a lack of 

economic resources and mobility, lesbian bars were few and 

far between. In Boston, for instance, about a dozen 

gay bars appeared in the 1950s, but only one catered to 

women. (Which, in fact, remains true today.) Women often 

socialized with homosexual men at mixed establishments. 

The bar sub-culture provided a stable, large community in 

which lesbians could meet one another and develop a sense of 

identity. Still, it was a potentially dangerous environment. 

Poet Judy Grahn writes of her experience during this time: 

The bar had considerable dangers. Sailors 
lurked in the alleys outside, waiting to 
prove their "manhood" on our bodies; more 
than once they beat someone I knew — dike 
or faggot -- on her or his way home. A 
brick crashed through the front window one 
night, scattering glass splinters over the 
dance floor . . . Another night two 
policemen came up to the table where I sat 
with my friend from the service. They 
shined a flashlight into our eyes and 
commanded us to stand up or else be 
arrested. Then they demanded that we 
say our real names, first and last, 
several times, as loud as we could. . . 
We had no internal defense from the 
self-loathing our helplessness inspired 



11 



and no analysis that would help us 
perceive oppression as oppression and 
not as a personal taint o£ character. 
Only the queens with their raucous sly 
tongues helped us get over these kinds 
o£ incidents. They called the policemen 
"Alice Blue Gowns," insulting them behind 
their backs. . . . one plump faggot in a 
cashmere sweater would begin and soon 
we would be laughing and feeling 
strong again. (12) 

While DOB matured into an important lesbian institution 

which voiced women's concerns in the gay liberation movement, 

it suffered from the same lack of economic resources and 

invisibility within the men's movement and the growing 

feminist movement that lesbians suffered in heterosexist 

society. Nevertheless, during the late fifties and early 

sixties, DOB provided a vital, creative forum for emergent 

lesbian feminist perspectives. The founders challenged the 

insidious sexism that permeated the male-dominated homosexual 

organizations. At a Mattachine convention in 1959, Del Martin 

"exploded. " 

At every one of these conventions I attend, 
year after year, I find I must defend the 
Daughters of Bilitis as a separate and 
distinct women's organization . . . What 
do you men know about Lesbians? In all 
of your programs and your "Review" you 
speak of the male homosexual and follow 
this with -- oh, yes, and incidentally, 
there are some female homosexuals too 
and because they are homosexuals, this 
should apply to them as well. . . . 
Lesbians are not satisfied to be 
auxiliary members or second class 
homosexuals. (13) 

DOB was committed to maintaining the autonomy of women 

within the movement and to defining a distinctly lesbian 



12 



perspective. While remaining overwhemingly white and 

middle-class in its membership, DOB attempted to air a 

diversity of perspectives on lesbian and women's concerns, 

including Black women, and began to define the beginnings of 

lesbian feminism. A well-known letter is attributed to 

playwright, Lorraine Hansberry. In it she links homophobia 

to misogyny. It was published in the Ladder in 1957: 

It is time that "half the human race" had 
something to say about the nature of its 
existence. Otherwise -- without revised 
basic thinking -- the woman intellectual 
is likely to find herself trying to draw 
conclusions -- moral conclusions -- based 
on acceptance of a moral superstructure 
which has never admitted to the equality 
of women and therefore is immoral itself 
. . . In this kind of work there may be 
women to emerge who will be able to 
formulate a new and possible concept that 
homosexual persecution and condemnation 
has at its roots not only social ignorance, 
but a philosophically active antl-feminlst 
dogma. (14) 

Frustrated with the male-dominated politics of the Left 

and of gay liberation, lesbians began to air feminist 

questions in publications and private gatherings. The 

"social change" rhetoric of gay liberation and early Black 

civil rights movements did not incorporate a commitment to 

women's lives — as women. Lesbians' significant 

contributions to the gay liberation movement continued to go 

largely unrecognized. Anger at the institutionalized 

invisibility of lesbians in the gay movement fueled the 

development of the modern lesbian feminist movement. Barbara 

Grler, writing under the pseudonym, Gene Damon, voiced the 



13 



anger of many lesbians: 

The homophile movement in general consists 
of fifty or more organizations all over 
the U.S. and Canada. ... As you might 
expect, the organizations open to both 
male and female homosexuals practice the 
same sort of denigration of women as does 
heterosexual society at large. Women in 
these organizations are rare. When they 
are members, no matter how loyal, 
they seldom hold office, and if they do, 
it is, yes, secretary or treasurer. . . 
When you examine, however, the bond that 
should bind these people, the male and 
female homosexuals, it is simply 
intolerable to find the social 
prejudices reinforced there. (15) 

A feminist torch was lit in the gay liberation movement 
which openly lesbian women later carried with them into the 
radical Left political movements, the feminist and womanist 
movements of the 1970s and 1980s. Lesbians in the gay 
movement had expected solidarity with gay men. They hoped 
men would sympathize with the injuries of institutionalized 
misogyny that Lorraine Hansberry articulated in 1957, and see 
that the persecution of homosexuals had roots in woman- 
hating. The alliances women and men had built were fragile 
and fleeting. Personal relationships among lesbians and gay 
men were sustainable, but political solidarity between the 
gay male llberationists and feminists and civil rights 
activists remained superficial. 

Gay and Lesbian Vlslbllty: 1960 - 1970 

The end of 1950s and early 1960s saw the emergence of 
the San Francisco bohmenlan subculture in which openly 



14 



homosexual men celebrated themselves. The "beat" writers, 

Allen Ginsberg and Jack Kerouac, challenged literary taboos 

with their use of explicitly sexual, including homosexual, 

language and situations in their works. In American culture, 

open information exchange about sexuality and burgeoning 

literature with gay and lesbian themes and characters made 

homosexuality no longer a taboo topic for discussion. 

Predictably, this Increased visibility of gay men and, 

to a lesser extent lesbians, threatened and agitated the 

political authorities who employed intimidation tactics. 

Typically, those outside of economically privileged or 

intellectual circles bore the brunt of the attacks. In the 

midst of the 1959 election campaign, San Francisco Mayor 

George Christopher, who took pride in his reputation as a 

% law and order man,' ordered sweeps of San Francisco gay 

bars, The mayor buckled to pressure again in 1960 - 1961 

when several gay bar owners testified that police officers 

had been demanding money in exchange for protection from the 

Alcoholic Beverage Commission. The ensuing scandal portrayed 

the police as "honest men defending the public morals" 

16 
against the "notorious" and "repellent" homosexuals. 

Homosexual activity was still illegal at that time and proof 

of illegal acts being committed was needed to rescind liquor 

licensure. City authorities stepped up harassment, training 

young officers how to dress and act in order to entrap bar 

patrons. The campaign resulted in an increase in felony and 

misdemeanor charges filed against both men and women. About 

15 



17 
forty to sixty bar patrons were rounded up each week. These 

tactics were employed in cties and towns across the United 

States. While open lesbians shared in the humiliation and 

persecution, they continued to enjoy only marginal inclusion 

in the political leadership of the movement. 

Against the background of increased harassment and 

arrests, a new surge of resistence was brewing. Amidst a new 

18 
growing "culture of protest," inspired by the Black civil 

rights, the Black Power and Black Nationalist movements of 

the 1960s, a new militancy among gays and lesbians took hold. 

Historian John D'Emilio analyzes an event at Columbia 

University in which the student homophile league picketed a 

medical forum on homosexuality on the same day that Black and 

white student radicals initiated a week-long occupation of 

campus buildings. 

Black power quickly came to embody a 
distinctive form of politics and culture. 
In many ways it represented a reversal of 
the dominant, long-term trend in American 
society, the assimilation of ethnic and 
cultural minorities in the American 
melting pot. Black power advocates began 
speaking about structural racism and 
systematic oppression rather than prejudice 
and discrimination. As their goals, liberation 
replaced equality, and self-determination 
superceded integration. They talked of 
organizing the black community, fashioning 
an independent power base, and preserving 
their autonomy and separateness from white 
society. Instead of minimizing the 
differences between the races, these new 
militants celebrated them. Black became 
beautiful, as young radicals took the 
stigma out of skin color and made it a 
source of pride. (19) 

The politics of Black power had a profound influence on 

16 



the gay liberationlsts, some of whom were involved In 
leftist politics and anti-racism. The new politics of 
liberation created a conflict within the gay and lesbian 
community's old guard — represented by the Mattachine 
Society and the Daughters of Bilitis — who sought public 
acceptance and integration and the new militants who, taking 
their cue from Black leaders, sought to make being gay or 
lesbian a source of pride. 

The new militants sought to wrest authority regarding 
homosexuality and homosexual experience away from the medical 
profession and relocate it within the gay and lesbian 
community. Protests, like the one at Columbia University 
were characterized by "zaps" in which gays and lesbians would 
appear, uninvited, at medical and psychological conferences 
on homosexuality --sometimes shouting down offensive speakers 
-- seeking to discredit the disease theory of homosexuality 
and assert their belief that "gay is good." 

The emergent modern feminist movement created some 
confusion and frustration among lesbians involved in gay 
liberation politics who hoped that the women's movement could 
address the concerns that the predominantly male movement 
would not. For example, Del Martin, one of the founders of 
DOB joined the National Organization for Women in 1967 and 
questioned the wisdom of DOB's continuing alliance with the 
gay rights agenda given the sexism in that movement. She 
wrote in The Ladder: 



17 



The Lesbian is first of all a woman . . . 
It is time that the Daughters of Bilitis and 
the Lesbian find and establish a much broader 
identification than that of the homosexual 
community and the homophile movement. The 
"battle of the sexes" which predominates 
American Society prevails in the homosexual 
community as well and the Lesbian finds 
herself relegated to an even more inferior 
status. (20) 

Many Lesbians in the gay rights movement, however, doubted 

that an alliance with heterosexual women would reap any more 

success, given the entrenchment of homophobia among 

heterosexual women and a perceived unwillingess to "give up 

21 
their pedestals." 

In 1968, the leadership of DOB shifted; there emerged a 

distinctively unapologetic lesbian-feminist analysis that 

united lesbian and women's liberation --connected to but not 

directed by the men's agenda. This radical movement tore at 

the fiber of DOB's establishment. The Ladder was criticized 

for becoming more polemical and uncomprising, representing 

22 
lesbianism as the embodiment of feminist principles. As 

Rita LaPorte and Barbara Grier took the helm, conflicts that 

had been brewing for years, bubbled over. By 1970, DOB could 

no longer sustain its national organization and each chapter 

was left to survive on its own. The same fate that befell 

the Mattachine Society and other groups that were more 

comfortable with social integration rather than social change 

befell DOB. In 1990, the only surviving active chapter of 

DOB is in Cambridge, Massachusetts. 

Outside of DOB, lesbians who were radicalized in the 



18 



gay liberation and civil rights movements advanced the 
development of a radical lesbian feminist perspective. Based 
in the belief that the personal is political, women gathered 
in "consciousness raising" groups to develop a political 
analysis rooted in personal experience. The 1970s marked the 
emergence of distinct lesbian feminist political voices. 
Radical lesbian feminists began to advocate a for "separate 
space" for women-only activities such as political action or 
affinity groups, cultural events, media and communities. Due 
to economic and class privilege, which permitted Independence 
from men, separatists tended to be mostly white middle and 
upper-strata women. Also, Black, Latino and Asian lesbians 
who were battling racism and sexism, maintained links with 
other movements for justice. Political analysis by women of 
color, asserted that gender is only one among several 
societal oppressions, therefore, the separatism that some 
white lesbians advocated was not viable when an entire 
people's survival hung in the balance. 

Summary. The gay liberation movement from 1940 through 
1970 made significant Inroads toward social visibility and 
was successful at forcing the psychiatric establishment 
to re-evaluate its theories about homosexuality. It 
established links with other movements for justice, and 
learned from them, particularly the Black Power movement. 
Internal inconsistencies and pervasive sexism and racism in 
the leadership, however, prevented the gay liberation 
movement from embracing a women's liberation or civil rights 

19 



political agenda. 

The U.S. Christian Church and Gay and Lesbian Liberation 

Of the lesbians involved in gay and lesbian politics of 

liberation, a substantial majority were alienated from the 

religious traditions of their childhood. While the Jewish 

and Christian religious leadership did not, on the whole, 

greatly advance the fight against heterosexism and 

homophobia, they did not remain totally removed from it. 

During the 1960s and 1970s some religious leaders spoke out 

on different sides of the dialogue on de-criminalizing 

homosexual behavior. But the heterosexlst theologies which 

form the basis for Christian theologies of sexuality and 

marriage continued to assault the humanity of women and gay 

men. Heterosexism is predicated on the assumption that male 

domination of women's lives is compatible with the will of 

23 
God. It is also the foundation of gay and lesbian 

oppression. I think it is important to acknowledge some of 

the history which informs to a certain extent, the 

relationship lesbians have with religion. This history will 

form the basis for understanding lesbians' appropriation of 

spiritual and religious resources in doing AIDS work. 

Roman Catholic Church. During the 1960s and 1970s 

American Churches became involved in questions about 

homosexuality and about women's societal roles. The Roman 

Catholic Church convened the Second Vatican Council in 1963 

which represented, for many, the opening of the windows of 



20 



the Catholic Church onto the world. 

The stated intent of the Second Vatican Council was to 
open the catholic church to the modern world, to confront the 
realities of human life in all of its complexity. The most 
dramatic changes appeared in the Roman liturgy and in 
ecclesiology. The traditional Mass in which the priest 
recited Latin prayers with his back toward the congregation, 
was replaced by a vernacular liturgy which involved the 
assembly. The Vatican II documents often refer to the 
"priesthood of the faithful" which is shared in common by all 
believers in Christ. This emphasis on shared ministry is 
overshadowed in the documents by the reiteration of the 
theology of the ministerial priesthood: 

Though they differ essentially and not 
only in degree, the common priesthood 
of the faithful and the ministerial or 
hierarchical priesthood are none the less 
ordered one to another; each in its own 
proper way shares in the one priesthood 
of Christ. The ministerial priest, by 
the sacred power that he has, forms and 
rules the priestly people; in the person 
of Christ he effects and the eucharistic 
sacrifice and offers it to God in the 
name of all the people. (24) 

The Second Vatican Council's reforms brought to new light, 

for Americans and Catholics worldwide, the inherent 

contradictions and oppressive theological assumptions about 

the laity, about women and sexuality in general. The Vatican 

documents acknowledged the need for the Church to engage 

fully in the activities of the world but also reaffirmed its 

traditional positions on the sanctity of marriage as the only 



21 



moral human situation for sexual expression. 

Roman Catholic teaching on homosexuality acknowledges a 

distinction between constitutional ("incurable") 

homosexuality and homosexual behavior that is "transitory or 

25 
at least not incurable." It views gays and lesbians as a 

freak of nature or victims of a corrupted education. To 

choose to live as a gay man or lesbian when one could choose 

otherwise is condemned as sinful. The church's pastoral 

recommendations as outlined in the Declaration on Sexual 

Ethics attribute the oppression of gays and lesbians to a 

personal not societal problem: 

In the pastoral field, these homosexuals 
must certainly be treated with understanding 
and sustained in the hope of overcoming 
their personal difficulties and their 
inability to fit into society. (26) 

Church teachings maintain that celibacy is the only moral 

expression of such an orientation. 

Groups such as Dignity, a national association of 

Catholic lesbians and gays, emerged to develop a community 

among those wanting to stay affiliated with the Roman Church. 

At Dignity, Sunday liturgies tend to be attended mostly by 

gay men. While there are lesbian subcommittees within the 

organization, because of the small female membership women 

have had to struggle for vislblity and power within Dignity. 

Special, but controversial, "women's liturgies" that are not 

led by male priests are held occasionally with whole 

27 
community and, more regularly, in women's homes. 

U.S.Protestant Churches In the mid-1960s, mainline 

22 



Protestant churches began to evaluate the political and 
social climate for social change. The San Francisco Council 

on Religion and the Homosexual (CRH) ignited debate and 

reconsideration of Christian attitudes toward same-sex 

28 
relationships. The CRH brought together ministers and 

theologians from denominations around the country to symposia 

on homosexuality. Officials from the United Church of 

Christ, Protestant Episcopal Church, Lutheran Church of 

America and Methodist Church met with the CRH. Both the 

United Church of Christ and the California Episcopal Diocese 

29 
gave financial support. While no mainstream religious 

bodies revised the moral opprobrium attached to homosexual 
behavior, some questioned its criminalization. 
Representatives from several churches supported the de- 
criminalization of homosexuality and the repeal of sodomy 
laws. Gays and lesbians also created organizations within 
their denominations such as Integrity (Episcopal). Troy 
Perry, an evangelical minister, founded the Metropolitan 
Community Church, a Christian congregation of gays and 
lesbians. 

To date, a small number of Protestant denominations 
ordain openly gay and lesbian clergy. Some ministers and 
congregations will recognize or bless lesbian and gay 
"unions" or relationships. Even, so gay and lesbian 
sexuality is generally tolerated only under conditions 
resembling heterosexual marriage, i.e. monogamy. 

The rise of fundamentalist ideology and "televangelism" 

23 



had an initial volatile impact on gay rights when television 
celebrity, Anita Bryant, launched a campaign against 
homosexuals in 1977. While that particular campaign against 
gay rights failed, Jerry Falwell and the Moral Majority 
movement followed and was strengthened by the imprimatur of, 
then presidential candidate, Ronald Reagan, North Carolina 
Senator Jesse Helms and other national and local right wing 
politicians. While these events pre-date the AIDS epidemic, 
they laid the groundwork for a "non-response" to the epidemic 
on a societal scale and for the blame-the-victim theology 
that permitted the churches to ignore the sick, dying and 
infected members in their own communities. The foundation of 
misogyny and homophobia could not have set a worse stage for 
the Introduction of a deadly sexually transmitted infection 
such as AIDS. 

Lesbians of Color in the Gay Liberation Movement 

Women of color, particularly Black women had been 

immersed in the Civil Rights movement in the U.S. Like other 

male defined, male controlled efforts and institutions women 

had their "place" in the organization and in the Black 

Church. Jacqueline Grant writes: 

It is instructive to note that the 
experience of Black women working 
in the Black Power Movement further 
accentuated the problem of the oppression 
of women in the Black community. Because 
of their invisibility among the leader- 
ship of the movement, they, like women 
of the church, provided "support": they 

24 



filled the streets when numbers were 
needed for demonstrations, they stuffed 
envelopes in the offices and performed 

other menial tasks. (30) 

While women held leadership positions in organizations, such 

as the Student Nonviolent Coordinating Committee (SNCC), that 

were linked in the Civil Rights and Black Power movements, 

31 
women were subjected to "constant conflicts" simply because 

they were women. 

The Black Church has long been a unifying institution 

for justice in the African American community. 

In the minds of the black churches, 
aggressive action in behalf of justice 
has always been tantamount to serving 
the needs of the race. . . . [Tlhey 
have viewed justice, improving the quality 
of the race's life, as grounded in truth, 
that is, in the will of the Redeemer. (32) 

Action on behalf of the justice for the Black community 

is doing God's will. Community and church expectations of 

women is to serve the community. For lesbians in the Black 

community, doing justice and resisting heterosexist 

oppression meant risking the homophobia of one's own 

community. Black feminist author, Barbara Smith writes, "so 

many Black people have argued that by being a Black feminist 

(particularly if you are also a Lesbian) you have left the 

race, are no longer part of the Black community, in short, no 

33 
longer have a home . " 

While Black lesbians were Involved in the development 

of the gay and lesbian liberation and feminist movements, 

they fought layers of oppression in the form of white racism, 



25 



sexism in the white-dominated organizations and homophobia in 

the Black community. Audre Lorde wrote in Zaml : 

During the fifties in the Village, I 
didn't know the few other Black women 
who were visibly gay at all well. Too 
often we found ourselves sleeping with 
the same white women. We recognized 
ourselves as exotic sister-outsiders 
who might gain little from banding 
together. Perhaps our strength might 
lay in our fewness, our rarity. That's 
the way it was Downtown. And Uptown, 
meaning the land of Black people, seemed 
very far away and hostile territory. (34) 

"Ernestine Eckstein" la pseudonym] was a Black lesbian 

activist with the Congress of Racial Equality (CORE) who 

joined DOB in an attempt to radicalize the organization in 

1965. Finding her efforts frustrated by an entrenched old 

guard, she resigned, as did other activists during that 

35 
time. There were Black lesbians active in the movement, 

but in very small numbers. 

The Black feminist and womanist movements of the 1970s 

and 1980s drew lesbian, bisexual and heterosexual women of 

color into conversation about the experience and social 

dynamics of sex, race and class oppression and liberation. 

These same women have called liberal feminists to account for 

having an insufficient analysis of the interstices of race 

and class with gender oppression. Within the African 

American community, these women provided the foothold for the 

later development of social services and community 

organizations to address AIDS in communities of color. African 

American lesbians developed social analyses in the context of 



26 



the civil rights movement and the continuing struggle for 
liberation. The participation of Latina, Asian and Native 
American lesbians in the gay liberation movement is not well 
documented. During the seventies and eighties, the powerful 
writing and activism of women of color in the articulating 
feminist and lesbian voices joined with the gay liberation 
movement . 

Racism in the gay movement made gay political 
organizations hostile territory for lesbians of color. The 
invisibility of people of color in the gay liberation 
struggle led to later inequities and conflicts in AIDS 
organizational development. 



27 



Contemporary Gay and Lesbian Politics 

The stonewall Riots in New York city ushered in the 

contemporary gay liberation movement. On Friday, June 27, 

1969, police officers raided the Stonewall Inn on Christopher 

Street in Manhattan's East Village. In the middle of an 

election, Mayor John Lindsay agreed to a police clean-up of 

the city's bars. 

The Stonewall Inn was an especially 
inviting target. Operating without a 
liquor license, reputed to have ties 
with organized crime, and offering 
scantily clad go-go boys as entertain- 
ment, it brought an "unruly" element to 
Sheridan Square. . . Patrons of the 
Stonewall tended to be young and nonwhite. 
Many were drag queens, and many came from 
the burgeoning ghetto of runaways living 
across town in the East Village. (36) 

Bar patrons present during the raid responded In anything but 

typical fashion: 

[The] scene became explosive. Limp wrists 
were forgotten. Beer cans and bottles 
were heaved at the windows and a rain of 
coins descended on the cops. . . . Almost 
by signal the crowd erupted into cobblestone 
and bottle heaving . . . From nowhere came 
an uprooted parking meter — used as a 
battering ram on the Stonewall door. I 
heard several cries of "Let's get some gas," 
but the blaze of flame which soon appeared 
in the window of the Stonewall was still 
a shock. (37) 

Rioting continued through the night, with Puerto Rican 

transvestites and young street people leading charges against 

the police. By the following night, graffiti calling for 

"Gay Power" appeared and two days of riots followed. The 

Stonewall riots and the ensuing national publicity sparked a 



28 



nationwide emergence of gay liberation organizations or 

"fronts." 

Stonewall galvinized the gay and lesbian community's 

anger and frustration into a full-fledged movement. The 

early 1970s marked the initiation of Gay Freedom or Gay Pride 

days in which gay men, lesbians, blsexuals and supporters 

"come out" during parades and marches through the streets of 

large and small U.S. cities. Gay historians assert that the 

movement matured in that decade. Gays and lesbians found 

themselves forming a new community which began to make 

concrete demands of the city, state and federal governments, 

e.g. anti-discrimination ordinances and financial support of 

gay organizations. Even so, the movement retained an 

adversarial relationship with government because of the 

movement's emphasis on self-assertion ("coming out") and 

38 
challenging social stigmas. 

As the movement matured, its focus shifted to electoral 

politics. The increased visibility of gay men, especially, 

brought a backlash from the white heterosexual majority. 

Anita Bryant's Florida-based anti-gay campaign in 1977 

portrayed "homosexuals" as child-abusing miscreants. In San 

Francisco the gay community had swelled to 70,000 (in a city 

of 650,000 people), extending its political power at the 

voting booth. Harvey Milk, a camera shop owner in the Castro 

district, was elected as a city supervisor in 1978 — the 

first openly gay elected official in the United States; he 

was assassinated a short time later together with San 

29 



Francisco Mayor George Moscone by Dan White. 

By 1980, the feminist and gay movements had established 

themselves as vital, creative forces for liberation from 

heterosexist patriarchal norms. However, that early fervor 

was being eroded by a "tendency toward mainstreaming and 

39 
reprivatization of sexual identity." The new 

conservatism and the Moral Majority were becoming powerful 

societal counter-forces to liberal and radical politics 

among the gays and lesbians, challenging ideas about "gay 

community." The feminist and gay liberation movements, 

however, also began to confront criticism from communities of 

color, particularly feminists and womanists, for having a 

lack of race and class analysis. The early 1980s saw, on one 

hand, the emergence of coalition-building between white 

feminists, gay liberationists and Black and Latino feminists, 

womanists, mujeristas and other progressives who united under 

a "Rainbow Coalition" which represented an alternative to the 

traditional two-party political machinery. On the other 

hand, some lesbians and gay men acquired economic power and 

resources which they used to create small mostly-white urban 

ghettos which made it easier to be publicly gay or lesbian 

and to disconnect from political Involvement and solidarity 

40 
with disenfranchised communities. 

Conclusion 

The creation of a visible gay and lesbian community, 
with legal protection from individual and institutional 



30 



discrimination continues to Inspire activism. But progress 
in the movement for gay and lesbian rights has been 
characterized by "power-over" politics which frustrate, and 
sometimes thwart, action for justice. The AIDS epidemic has 
made gay men and lesbians more visible than ever. But an 
increase in hate-crimes or "gay-bashing" in response to 
greater gay and lesbian vlsbility is testimony to the 
violence institutionalized homophobia In society at-large 
perpetuates. While sodomy laws, used to persecute gays and 
lesbians, were successfully repealed in most states during 
the late 1970s, a backlash against gay rights corresponding 
with the AIDS epidemic, has justified the upholding of such 
laws in more recent times. 

The notion and experience of a gay and lesbian 
community is a recent development, and still, amidst the AIDS 
epidemic, a fragile one. The social dynamics of racism, 
sexism, class oppression and internalized homophobia continue 
to frustrate the unifying efforts of designated gay and 
lesbian leaders. Gay and lesbian politics have not been 
Immune to infighting and conflicting hidden and manifest 
agendas. Plagued by its own white, middle strata biases, the 
inclusion of a true "rainbow agenda" which incorporates the 
full complexity and diversity of gay and lesbian people and 
their connections with other oppressed peoples has not been 
realized. Nevertheless, the growing strength of a visible 
lesbian and gay minority with a base of economic and 
political power in the United States laid the groundwork for 

31 



a response to the AIDS epidemic in the absence of 
governmental or majority leadership. 



32 



CHAPTER TWO: The AIDS Epidemic In the United States 

The AIDS Crisis: 1981 - 1985 

AIDS — the Acquired Immunodeficiency Syndrome — was 

first Identified In the United States In June, 1981. The 

Morbidity and Mortality Weekly Report , the Center for Disease 

Control's official publication, reported six cases of gay men 

In Los Angeles who died from a rare form of pneumonia called 

Pneumocystis carlnll pneumonia (PCP). Soon after, more gay 

men In New York City and San Francisco were reported to have 

died of a cancer, Kaposi's Sarcoma (KS), which generally 

occured in a non-fatal form in elderly Italian or Ashkenazi 

1 
Jewish men. Initially, to the medical establishment, these 

cases appeared dissimilar and unrelated. The men were 

2 
characterized as having been "previously healthy" and then 

suddenly developing an unexplainable life-threatening 

suppression of their immune systems which left them 

vulnerable to countless opportunistic diseases. At first 

these cases were referred to as "gay pneumonia" and "gay 

cancer" and later, as the deaths grew more numerous, the Gay 

Related Immune Deficiency or GRID. While the first deaths 

from what finally became known as AIDS were discovered in 

1981, retrospective analysis of medical records indicate that 

the first AIDS deaths in the United States and elsewhere, 

date back to the late 1970s. 

By 1982 when it became apparent that this mysterious 



33 



Immune deficiency syndrome had not been contained within the 
gay male population, GRID was renamed AIDS. At that time, a 
number o£ women were diagnosed with PCP. All o£ them had 
been known to be sexual partners of bisexual men or 
intravenous drug users. Globally AIDS had affected a much 
more heterogeneous population than in the United States up to 
that point. In Zaire, and elsewhere in Africa and the 
Caribbean, AIDS was being diagnosed in heterosexually active 
women and men with equal frequency. AIDS cases were also 
being reported in Europe and Asia. 

Haitian immigrants to the United States were found to 
have a disproportionately high rate of AIDS. This community 
suffered discrimination in housing, education and health care 
as a result of racism fueled by misinformation about AIDS. 
In some cities, gay community-based AIDS organizations worked 
with Haitian physicians and community leaders to provide 
medical care and education. Epidemiologists categorized 
Haitians as a "high risk group" along with gay men. This 
label (withdrawn in 1986) served to severely stigmatize and 
isolate this already struggling community. 

For the U.S. gay and lesbian community, AIDS 
represented not only a threat to health but to the political 
movement and gay and lesbian sexuality as a whole. Enormous 
fear and panic accompanied the arrival of public health 
officials into sanctuaries of gay male sexuality such as 
bars, bathouses and cruising areas. During the last decade, 
the gay liberation movement had established a foothold within 

34 



the medical establishment on issues regarding gay sexuality 
and identity. There was not yet enought trust between the 
gay and medical communities to quell the fears and suspicions 
of the gay community as public health officials sought to 
interview gay men about their sexual practices and recommend 
behavioral prescriptions for "safe sex." 

Lesbians worked with gay men in the formation of the 
gay community's earliest efforts to organize, educate and 
care for its members between 1981 and 1983. They brought 
years of community organizing, self-help strategies from the 
women's health movement and, often, insight into the 
connections between aids and other struggles for access to 
health care and social services. While many gay men who were 
Instrumental in setting up community-based AIDS organizations 
had political and community organizing experience, for the 
majority of gay men affected by AIDS, having sex was their 
primary (and most personally significant) expression of 
resistance to heterosexist ideology. No one was prepared for 
the scope of the AIDS/HIV epidemic and what it would demand 
from the gay and lesbian community. 

When AIDS hit, the former "activists" were 

involved in the more comprehensive 
issues of coalition-building, while 
the "clones," who would appear to be 
first and hardest hit by AIDS were busy 
consolidating ghetto life, without the 
benefit of the organizational strategies 
and ideology that had won a modicum of 
rights and political clout. The initial 
reaction of the urban clones was that 
AIDS was an individual problem which 
required group support and a group 
solution. But they soon encountered 



35 



the systemic complexities: homophobia, 
racism and sexism set up blocks at 
every turn. (3) 

The first grassroots gay community organization 
dedicated to AIDS was formed in New York City, Gay Men's 
Health Crisis. In other cities, the San Francisco AIDS 
Foundation, the Boston AIDS Action Committtee, the AIDS 
Project Los Angeles and others grew out of the gay and 
lesbian community's devastation and commitment to prevent 
AIDS, care for those who were sick and support friends and 
loved ones of people with AIDS. In some cases, lesbians were 
among the founding members of these organizations, which 
developed sex-positive guidelines for safer sex and 
distributed them in gay bars and baths, trained volunteers to 
support the sick, their friends and families, and lobbied 
government agencies for financial support. These efforts are 
remarkable, in part, because they commenced at a time when 
people still didn't know exactly what caused AIDS or how it 
was transmitted. In 1982, scientists discovered that HTLV- 
III (later renamed HIV — Human Immunodeficiency Virus) could 
be found in the blood of nearly everyone with AIDS, but no 
one was certain that it was the only cause of AIDS. 

Other AIDS service and advocacy organizations developed 
within existing gay and lesbian health agencies and sexually 
transmitted disease (STD) clinics such as the Fenway 
Community Health Center in Boston, the Whitman Walker Clinic 
in Washington, D.C. and the Howard Brown Memorial Clinic in 
Chicago. These gay-identified agencies were experienced in 

36 



providing gay health care and were among the first to care 
for people with HIV infection in the U.S. HIV-related 
services evolved in extension of the mission of those 
organizations. 

As evidence supporting HIV as the cause of AIDS 
mounted, more was learned about its transmission. 
Epidemiologists determined that the virus was transmitted 
sexually through intercourse (oral, anal and vaginal), 
parenterally, through sharing needles to inject drugs or 
receiving infested transfusions e£ bleed er bleed products 
and perinatally, to a fetus or a nursing infant. Those at 
highest risk for exposure to the virus were thought to be gay 
or bisexual men, intravenous drug users, hemophiliacs, 
Haitian immigrants, transfusion recipients, and the sexual 
partners of the above. In later years, as epidemiologists 
and educators began to emphasize "at-risk behaviors" over 
"groups", Haitian immigrants were removed from the list. 
There was no evidence linking lesbians as a group to 
infection with the virus. 

The emergence of HIV/AIDS education, advocacy and 
health services within the gay community provided necessary 
care and support for thousands of gay men and their friends 
and families. The primary identification of these agencies 
as gay made "coming out" as people with AIDS (PWAs) easier 
because support and advocacy could be accessed through 
community channels. For non-gay PWAs, the visibly gay 
character of these first AIDS organizations became obstacles 

37 



to care and support. It was not uncommon for non-gay people 
with HIV to refuse services £*©» these AIDS organisations out 
of fear of being stigmatized as being homosexual. Also, 
nearly all of these first organizations which expertly gauged 
the needs of white middle-class gay men, failed to see their 
racist and classlst assumptions about the gay community 
(i.e., white, middle-class) and other people with AIDS. 
Homophobia, racism and classism combined to create enormous 
challenges both for AIDS organizations which began in the gay 
community and for non-gay PWAs who needed services. 

The AIDS Industry: 1985 - 1990 

In the summer of 1985, the public discovery of 
Hollywood actor Rock Hudson's AIDS diagnosis rocked the 
United States. AIDS had finally hit home. For most 
Americans Rock Hudson was the first person with AIDS they 
"knew," while the actual number of diagnosed AIDS cases in 
the United States surpassed 11,000 and over one million were 
thought to be already infected. Hudson's illness and 
subsequent death brought AIDS into the mainstream, ending the 
media blackout and permitting a relatively frank discussion 
of AIDS in daily newspapers, magazines and television talk 
shows. It marked the beginning of the heterosexual 
population's concern and also initiated an era of increased 
public and private funding for AIDS education, research and 
care, despite utter silence from President Ronald Reagan. 

Gay activists and people living with AIDS had been 

38 



demanding government leadership and support of AIDS 

education, care and research for four years. However, the 

release of new government funds was accompanied by the 

federal bureacracy, interference and restrictions about how 

money was spent. Cindy Patton has analyzed the significance 

of this infusion of government money as a shift away from gay 

liberation-inspired resistance to a hostile government and 

medical establishment toward an "assimilation of gay 

activists into a new AIDS industry with its own commitments 

4 
and logie." Fueled by federal and state gzante to provide 

education and services, grassroots community AIDS 

organizations grew into multi-million dollar agencies. 

Meanwhile, parallel groups focusing on gay, lesbian and 

5 
women's issues struggled to stay solvent. 

The growth of AIDS paralleled the overall trends in 

health care delivery, as a for-profit business structure was 

adopted. Inpatient medical care for HIV infection and AIDS 

was projected to cost the insurance industry and taxpayers 

hundreds of millions of dollars over the first 10 years of 

the epidemic. But in the mid-1980s, after the discovery of 

HIV and the development of the HIV-antibody test, it became 

clear that AIDS could be profitable. Major teaching 

hospitals, threatened by the collapse of the medicaid and 

medicare systems and squeamish about absorbing the costs of 

HIV/AIDS care looked for revenue-generating alternatives. 

AIDS research was gathering momentum and resources from the 

National Institutes of Health and private pharmaceutical 

39 



manufacturers. AIDS research promised to be both lucrative 
and prestigious, Physicians involved in th§ testing and 
development of drugs started private companies in 
anticipation of profits and to take advantage of stock-market 
speculators who could finance their efforts. The development 
of the "AIDS industry" reflected the tenor of the health care 
industry, but experienced exponential growth during from 1985 
- 1989. 

The Rise of AIDS Organizations 

Nancy Stoller, a founding member of the Women* s AIDS 

Network in San Francisco and a faculty member at the 

University of California at Santa Cruz, has outlined a three- 

6 
stage model of the development of U.S. AIDS organizations. 

She charts the development of an increasingly bureaucratic 

hierarchical organizational standard that corresponds with 

the infusion of millions of dollars in private and public 

funding. These stages are not time-bound. In addition to 

reflecting the experience of AIDS organizations from 1981 - 

1986, they also apply to organizations who are just beginning 

now. For the sake of illustration, I will use Boston's AIDS 

Action Committee's (AAC) experience, however, this model 

applies to the experience of most AIDS organizations. 

Early - Limited Funds. In an organization's early 

period (which could last months or years) there is a high 

degree of community input into the design of programs, 

policies and fundraislng. Volunteers are utilized to 

40 



provide most organizational functions. In 1982 - 1983, the 
AAC was a volunteer committee based at the Fenway Community 
Health Center. It had no paid staff or budget, met in 
people's homes and relied on the charismatic leadership of a 
few community members. In 1983, the Fenway community Health 
Center incorporated the AAC formally as a committee of the 
Board of Directors with a small budget, its own checking 
account, an AIDS information phone "hotline" and a corps of 
40 volunteers. The work was labor intensive (door-to-door 
bar education, support groups, and the development of 
educational materials) and had a high degree of accountablity 
and identity with the gay community. 

Transition - Outside Funding . Initial government 
funding was earmarked for organizations already involved in 
AIDS work; from 1981 - 1986, that meant mostly gay-identified 
organizations. Individual states and the Centers for Disease 
Control invited AIDS service providers to apply for millions 
of dollars allocated by Congress and state legislatures. 
This transitional period was marked by an influx of staff 
paid to direct volunteers; independent incorporation, and a 
hierarchical organizational structure headed by a Board of 
Directors. In most cases, the Board was mostly white and 
male, as was the staffing of the agencies. At the AAC, this 
also marked a period in which lesbians who had been involved 
as volunteers and founding members, found their contributions 
devalued by white male paid staff. While the rhetoric of the 
mid-1980s reflected the attitude the "AIDS is not a gay 

41 



disease," in fact, the staffing patterns of AIDS 
organizations of that period stated otherwise. White gay men 
installed a homosexual version o£ the old-boys network whieh 
systematically excluded lesbians and people of color 
(including gay men) at most organizational levels. Lesbians 
who had provided substantial volunteer labor and consultation 
during the early formative period were often snubbed as those 
positions received funding. 

Later - Competitive Funding . This stage may be said to 
have two phases: Expansion and consolidation. As grants and 
contracts with governmental agencies and private foundations 
became competitive, AIDS organizations vied to prove they 
could carry out the flinders' agendas. AIDS organizations 
began to look more like corporations with a board of 
directors, executive and middle management. Community input 
was channelled through the board of directors. The 
composition of the board shifted away from gay community 
activists to domination by local elite (e.g. bankers, 
lawyers, insurance executives) who were perceived to enhance 
the agency's ability to win funding. The size and celebrity 
of AIDS organizations in many cities attracted heterosexuals 
and closeted upper class gay men to the boards. Agency 
budgets ballooned to several million dollars within two to 
four years. Additional staff, space and bureaucracy were 
needed to meet the accounting and reporting requirements of 
public funding sources. In the meantime, the AIDS/HIV 
epidemic was exploding outside of the gay community. 

42 



Gay-identified organizations found themselves in a 
double-bind. As gay organizations, they had developed 
excellent care models, provided services for gay men with 
AIDS/HIV and had developed effective educational and service 
strategies in that community. But as the face of the 
epidemic shifted, the African American and Latino 
communities, particularly, developed community-based 
responses and demanded equal access to the funding pool that 
had been earmarked for existing agencies. The established 

AIDS agencies scrambled to compete with agencies tooted in 
communities of color for funding by developing new "targeted" 
programming and multi-cultural advisory committees as a 
demonstration of good faith intentions to serve "everyone." 

In most states, people of color successfully proved 
their case for ethnically and racially specific community 
AIDS programs, thereby gaining access to the funding that had 
been the backbone of gay AIDS organizations. With the de- 
centralization of AIDS services and the "de-gaying" of the 
epidemic at the epidemiologic and public policy levels, AIDS 
organizations which had initially benefited from the infusion 
of public funding began to consolidate their services and 
staffing to meet the changing community needs. A number of 
regional and national groups emerged to provide community 
AIDS service coordination among agencies. The rise of AIDS 
projects in communities of color also opened doors to 
lesbians of color who could utilize their own skills to 
benefit a community with whom they felt primarily identified, 

43 



albeit often while remaining closeted. The genesis of AIDS 

programs in communities of color did not mitigate the 

homophobia that made it risky for lesbians to be open at 

work. 

The government, having Isolated itself from AIDS during 

the first years of the epidemic, needed the AIDS expertise of 

the gay community and communities of color. As gay groups 

worked more closely with the government, they talked less 

about sex. For the government's part, working with gay, 

lesbian and other minority groups, increased its awareness of 

the political consequences of homophobic and racist remarks 

and pronouncements. Cindy Patton, in her analysis of the 

rise of the AIDS industry, is careful to point out that the 

decrease in homophobic rhetoric should not be viewed as a 

7 
decrease in homophobic sentiment. In fact, the "de-gaying 

of AIDS discussion was simultaneous with increased attacks 

8 
against people with AIDS due to racism and classism." AIDS 

groups needed government funding and the government needed 

the guidance, support and volunteer base of the gay 

community. It simply became politically dangerous to make 

offensive remarks about communities upon which the government 

depended for information about and access to people who were 

infected with HIV. 

On one hand, lesbians and gay men of color who became 

involved with AIDS in their communities faced enormous 

personal challenges as they faced community homophobia. On 

the other hand, those working in predominantly white gay 

44 



organizations were faced with racist and classist attitudes 
and policies as community organizing and outreach strategies 
clashed with the burgeoning corporate model of AIDS services. 
Women of color who are openly lesbian often found themselves 
in the position of acting as the bridge between the gay 
community and their racial or ethnic community; they were 
relied upon to educate the Black (or Latino or Asian) 
community about homophobia, and the gay community about 
racism. A painfully familiar situation for women of color, 
poet Kate RUShin describes it in "The Btidfe Foeffli" 

I explain my mother to my father my father to my 

little sister 
My little sister to my brother my brother to the 

white feminists 
The white feminists to the Black church folks the 

Black church folks 
To the ex-hippies the ex-hippies to the Black 

separatists the 
Black separatists to the artists the artists to my 
friends' parents . . .(8) 

and now, gays and lesbians to the heterosexuals and AIDS to 

everybody. 

Lesbians who were accustomed to working in feminist 

collective environments or mainstream (i.e. heterosexist) 

health care and social service settings also had to adjust to 

the schizophrenic situation. For some gay men, AIDS services 

were an extension of the gay liberation agenda and had an 

inherent political connection with action for justice on a 

wide scale. As the grassroots shoestring-budget environment 

shifted to a corporate model, AIDS organizations with gay 

roots attempted to sever ties with political movements that 



45 



were not directly related to AIDS. For lesbian feminists who 
view the political implications and connections between AIDS 

work and social justice (e.g. women's reproductive health, 

anti-racism, etc.), the apolitical stance of some AIDS 

organizations conflicted with the inherently political 

analyses of feminists and womanists. Women working in AIDS 

education were expected to be familiar with every nuance of 

gay male sexuality, but were subjected to sexism and men's 

ignorance about women's anatomy, sexuality, and health 

issues. Organizations tolerated a general lack of interest, 

on the part of men within these organziations, in learning 

9 
anything from the experience of the women's health movement. 

The organizers of the National Lesbian and Gay Harch on 

Washington in October, 1987, drew connections between gay 

rights and the AIDS crisis. Gay men with HIV infection led 

the parade through the national capital in wheelchairs and 

buses signaling the key item on the gay political agenda: 

national leadership in the fight against AIDS. The Names 

Project AIDS Memorial Quilt commemorating those who have 

died, was displayed for the first time at the march. While 

gay people figured prominently in this first display, the 

Names Project has since de-emphasized the gay community and 

given heightened emphasis to the "human" loss. Organizers of 

the Names Project have responded to criticism by gays 

stating: 

The Names Project Quilt is a memorial 
to all people who have died of AIDS — 
regardless of of who they were or how 
they got it. It is true that we do not 
often use the words "gay" and "lesbian." 

46 



We also do not use words like "drug abuser," 
"black," or "Hispanic." 

Our critics who insist on such labels 
cause great harm. They strip away the 
individuality of each life and once 
again reduce the epidemic to categories 
and statistics. They also negate the 
humanity of others in the guilt who are 
not gay (or IV drug users or hemophiliacs, 
etc.) but whose battle with AIDS was no 
less difficult and whose loss was no less 
painful to their families and friends. (10) 

The overall de-gaying and attempts to de-politicize the 
AIDS/HIV epidemic were answered by the formation of political 
action groups who use confrontational tactics and street 
theatre. The most prominent of these is the AIDS Coalition 
to Unleash Power (ACT-UP). Founded by author/activist, Larry 
Kramer in New York City, ACT-UP has chapters in major cities 
throughout the United States. Comprised of people with 
HIV/AIDS and others, it is a predominantly white gay male 
group whose participation by lesbians and people of color is 
generally small but varies in each local chapter. It uses 
gay liberation political tactics, but focuses almost 
exclusively on AIDS issues, especially the release of 
experimental drugs for the treatment of HIV. 

ACT-UP has been criticized by activists in communities 

of color and by some feminists for not connecting AIDS issues 

with overall systemic forces of oppression of racism. Ronald 

Rowell, Executive Director of the Native American AIDS 

Prevention Center wrote to the National Minority AIDS Council 

newsletter in 1989: 

Once again in August at the National 
Minority AIDS Conference held in Washington, 



47 



ACT-UP members chose to Interrupt a speech 
of a person of color in order to stage a 
demonstration. . . . Parochial is not strong 
enough to describe act-up' s performance; 
ethnocentric and racist are perhaps more 
appropriate. The time has come to question 
whether ACT-UP deserves the support of people 
of color given the group's appalling lack of 
sensitivity to the needs and views of our 
populations. . . . What concerns me ... is 
that as people of color we are expected to 
keep quiet and let Anglo men decide the 
terms of our battle. Our opinions and 
experience once again do not count. (11) 

Throughout the country women have gathered at 

conferences to and within existing organizations to address 

the specific needs of women with HIV infection as well as 

women working in AIDS. These organizations include The 

Women's AIDS Network (WAN), the Boston Women's AIDS 

Information Project, the Women's AIDS Resource Network 

(WARN), and the Women's AIDS Resource Center at the Center 

for Women and Policy Studies. In addition, the International 

Working Group on Women and AIDS gathers in June of each year 

at the international AIDS conference. These organizations 

have been successful at raising important political and 

policy issues which concern women at risk for AIDS such as 

the forced sterilization of HIV-seropositive women, access to 

safe abortion facilities, the lack of lesbian education 

services and overall issues relating to the inadequacy of 

women's health care in this country. These same 

organizations have been plagued by poor funding, volunteers 

who are already over-extended by AIDS and political work, and 

lack of support by existing agencies. 



48 



Summary 

As in the gay and lesbian and civil rights 

movements, lesbians shared in the creation of the gay 

community's response to the AIDS epidemic. They brought 

experience in health care, community-organizing and, often, a 

stablizing presence to the chaotic and painful start of these 

12 
efforts. while lesbians continued as employees or 

advisors in these organizations, the infusion of government 

funding and the ensuing extraordinary organizational growth 

resulted, mere often than not, In the hisinf e£ white say 
male professional staff. In an efforts to promote a socially 
acceptable "professional" image, gay organizations hired 
white men in visible positions to supervise the line staff 
which consisted of other gay men, women and people of color. 
With few exceptions, white employees filled higher paying 
managerial roles and "general public" educational positions, 
while people of color filled non-professional "outreach" 
roles or "minority educator" jobs. 

As public funding resources broadened and became 
accessible to communities of color, white gay organizations 
were forced to re-evaluate their mission and commitment to 
serving non-gay people with HIV infection. Negotiations 
between gay organizations and other community agencies have 
brought a range of results in cities and towns all over the 
country. In general, the largest urban AIDS organizations 
are consolidating their services and streamlining staff as 
their funding dries up. Smaller community-based 

49 



organizations in neighborhoods, small towns and rural areas 
have sprung up or added aidb/hiv services to their misison to 
address the specific concerns of cultural or geographical 
communities. The de-gaying and de-centralization of AIDS/HIV 
care and education has facilitated the participation of a 
diverse assembly of lesbians and others in AIDS work, as we 
will see in future chapters. 



50 



CHAPTER THREE: Methodology and Study Design 

Feminist Liberation Methodology 

In undertaking this study, I have employed elements 

of feminist social research methodologies and feminist 

liberation hermeneutics to ground theological and ethical 

reflection and analysis in the experience of lesbians working 

directly with the AIDS epidemic. In doing so, I am risking 

sketchiness In describing their experience, for I am unable 

to generalize to any great extent from the responses of those 

who participated in the survey to all (or even most) 

lesbians. However, using this methodology also means that 

the power of these women's lives -- their struggles, passion, 

energy — stands on its own. Each completed survey 

documents a portion of the social history of the AIDS/HIV 

epidemic around the United States and in the history of 

lesbians. Together, the surveys combine to articulate 

questions and connections for feminist and womanist 

theorists, theologians and others who care about lesbians and 

AIDS/HIV. 

Methodology refers to the theory and analysis of how 

1 
research should proceed. Method refers to the techniques 

for gathering evidence (this will be addressed in the results 

section). A feminist methodology takes a primary interest in 

the well-being of women. The goal of feminist inquiry is to 

extract or develop an understanding of women's lives. 

A feminist analysis insists that the inquirer be placed 

51 



in the same critical plane as the subject matter, in so 

doing, the entire research project, not only the results, are 

available for scrutiny. The inquirer's own race, class, 

gender, culture, assumptions and behaviors must be placed 

2 
within the frame of reference. In the case of this study, 

my own social location and experience as a lesbian AIDS 

worker in a Boston gay community health center fashions the 

lens through which I formulated the study and interpret the 

results. 

It must be acknowledged, however, that there is a 

range of opinions on what comprises feminist methodology. 

There is not consensus among feminists about the appropriate 

relationship between the researcher and the subject matter or 

3 
study participants. Some liberal feminist empiricists 

assert that social biases which taint research about women's 

lives could be corrected through an individual researcher's 

strict adherence to favored scientific methodologies. 

Empiricists define social biases as prejudices due to false 

beliefs based upon superstitions or stereotypes. In this 

framework individual people are responsible for their own 

biases and for correcting them. The work of feminist 

inquirers, in this methodology, Is to notice biases and hold 

traditional scientific inquiry to its own norms. 

Unfortunately, it fails to recognize that the research 

methodologies themselves have been influenced by culture-wide 

prejudices, not merely misused by fallible researchers. 

This feminist methodology differs from its androcentric 

52 



counterpart in so far as feminists concede eplstemological 

privilege to marginalized people. Subjugated knowledge is 

information, apprehension and widsom of oppressed and 

marginalized people gained through struggle against the 

oppressors. These perspectives threaten and, therefore, are 

not reflected within dominant society. This knowledge 

provides foundations for analysis of racism, classism, and 

heterosexism. Feminist empiricists hold that inquirers who 

are socletally marginalized — women, for example — are more 

likely than oppressors -- white men -- to arrive at claims 

4 
unbiased by androcentr ism. Prevailing social theories are 

not objective, in the sense that they clearly serve the white 

male power structure. The goal of liberal feminist research 

is to expand the choices available to individual women. 

Feminist liberation methodology goes further into the 

margins than does liberal feminism to assert that the 

ultimate goal of research is not knowledge, or even the 

improvement of women's lives, but justice for all women. 

Justice is not the absence of power but power in right 

relation. It is not a state of being but a dynamic movement 

— love in action. Justice is not mere advocacy for the 

oppressed and marginalized but radical solidarity in the form 

5 
of mutual accountablity. Feminist Christian liberation 

methodology draws the connections between the christian ethic 

of love for neighbor and a radical preferential option for 

the poor, especially poor women and children who have the 

fewest options in most societies. 

53 



All theory Is rooted In praxis — critical reflection 

on lived experience or human action. This notion of praxis 

defies the familiar dualism between thought and action. It 

implies that all of our thought and activity shape how we 

6 
perceive the world and live in it. Liberation methodology 

begins with particularities — the specific circumstances and 
praxis of women -- in order to identify and analyze the 
Injuries and root causes of privilege and oppression, to 
clarify norms and develop strategic models for justice- 
making. Identifying the injuries of privilege is an 
essential distinction of liberation methodology. Privileges 

are life advantages that give us usually unnoticed power over 

7 
others. This attention to the dynamics of privilege and 

oppression prevents feminist liberation praxis from lapsing 

into bourgeois liberalism. 

A feminist liberation methodology acknowledges that the 

relationship between the subject and the inquirer is 

rife with the power dynamics that permeate culture. Power is 

not always a negative or destructive element. Power-wlth 

others is creative and enlivening. Power-over others 

8 
empowers some and disempowers others. In U.S. society, for 

example, the power-over dynamics of dominance and submission 

have conjoined sex with violence against women, economics 

with violence against people of color. Awareness of power 

and the location of the inquirer and the subject or 

participant in relation to one another -- the presence or 

absence of oppression or privilege — is essential to 



54 



truthful interpretation of the evidence by the researcher and 
the community. Liberationists assume that everyone has an 
investment in the outcome of social relations. Objectivity 
Is not the dominion of groups of intellectuals or guaranteed 
by a particular mode of inquiry. Bias is not eliminated by 
research design, and so must be factored into the results. 

Study Design 

The primary objective of this study is to recognize 
the contributions and give voice to issues of lesbians doing 
AIDS work. Secondarily, I intend to identify and examine 
their motivations, support systems and struggles as they 
undertake this work. I could not find any baseline data 
about the numbers of lesbians employed by AIDS organizations 
or the percentage of health care workers or social workers 
that are lesbian. In that regard, this is the first study of 
which I am aware that looks at lesbian experience in AIDS 
work. 

As stated earlier in this paper, my interest in this 
topic is rooted in my own experience as a lesbian doing AIDS 
education and program development for six years. It reflects 
my interest in making connections between my personal 
relationship to the HIV/AIDS epidemic and other women's 
experiences. Through my AIDS work, I have learned how race, 
class and sex are used to mask and manipulate political 
processes, policy development, staff hiring and resource 
allocation in the AIDS field and the health care industry in 
general. I have also learned how one's perspective on the 

55 



epidemic and on AIDS work is shaped by one's own social 
location. 

How does this study employ a feminist liberation 
methodology? First, I have been clear with the reader and 
also with study participants about my own relationship to 
AIDS work. Each respondent received a letter explaining the 
study and how it has emerged out of my own praxis as a 
feminist liberation theologian and lesbian doing AIDS work. 
I have attempted to maintain clarity about my assumptions and 
expectations in designing the survey and lntepreting the 
data. 

Second, the results of this research are examined in 
light of race, class and sex oppression, both in society at 
large, the workplace and in communities within which lesbians 
work and live. The injuries of internalized and externalized 
oppression permeate all minority communities, be they racial, 
ethnic or sexual minorities. In conducting this study, I 
have tried to remain fully mindful that women whose primary 
sexual and emotional relationships are with other women may 
not identify as lesbian. I have tried to be attuned to 
racism in the gay community, homophobia in the African 
American and Latino communities and sexism in all 
communities. And I recognize that the complex intersices of 
oppression can confound the most well-conceived analyses in 
any methodology. 

Early in the conception of this study, I decided to 
exclude no one who identified as a lesbian doing AIDS work, 

56 



including a broad geographic catchment, white women, women o£ 
color, disabled and able-bodied, newcomers and AIDS work 
veterans. Results gathered from a heterogeneous population 
do not lend themselves to generalizability. However, I was 
less interested in drawing expansive conclusions than in 
learning about the particular qualities and differences among 
lesbians who have chosen this field of work. In addition, I 
felt it was important to find out who is "out there;" I was 
curious about who might respond to a general call for 
participants. Would all white women respond? Mostly women 
of color? Catholics? New Yorkers? Who would view this as a 
worthwhile enterprise? 

Third, I undertook this study with the intent to learn 
how some lesbians address the spiritual and theological 
questions posed by loss, life-threatening illness, death and 
how these questions intersect with an understanding of 
themselves as lesbian. 

Finally, I hoped that this research might draw 
attention to the insidious phenomenon of lesbian invisibility 
at every level of work and in every community. While 
lesbians have been involved in many areas of nursing, health 
care delivery, education and community organizing, relatively 
few open lesbians are program directors or administrators. 
In this respect, AIDS services and organizing is consistent 
with established patriarchal patterns. A modest hope for the 
study's outcome was to establish a fuller understanding of 
lesbians' roles in formulating a response to AIDS/HIV and to 

57 



develop pastoral and employment strategies or recommendations 
to address the needs of those who do this work. 



58 



CHAPTER FOUR: Results and Discussion 

In approaching the task of learning about the 
motivations, support systems and attitudes of lesbians doing 
AIDS work, I developed a questionnaire. I wanted the survey 
to accomplish a number of things. First, in order to reach 
the greatest number of lesbians, it needed to be brief. A 
questionnaire that took longer than an hour to complete might 
be viewed as burdensome and, therefore, discarded. Second, 
it needed to record the demography of the sample. Questions 
regarding race, age, disabilities, religious background and 
current affiliations, educational level, and social/economic 
class background comprise the first third of the survey. 

Third, I felt the survey would reveal the diversity of 
attitudes and experiences if data was articulated in the 
participants' own words. Optimally, each woman would be 
interviewed In person. However, because of the time, space 
and economic constraints inherent in a nationwide sample, 
this was impossible. The survey questions were worded in an 
open-ended fashion, allowing for the lesbian's own 
interpretation and definition of such concepts as 
"spirituality," "support," and "relationship." The 
effectiveness of this approach will be discussed with the 
results . 

This survey (Appendix B) was sent to approximately 125 
women throughout the United States who are involved in AIDS 



59 



work. Their addresses were acquired through conference 

mailing lists, personal contacts and referrals. In addition, 

advertisements were place in two lesbian and gay community 

newspapers, Bay Windows (which has a New England circulation) 

and Gay Community News (which has a national circulation). 

The five page questionnaire was sent with a cover letter (see 

Appendix A) which invites the recipient to complete the 

survey, if appropriate, or to pass it on to a lesbian 

colleague or friend. Particular attention was given to 

contacting women of color from outside of Boston through a 

mailing list of attendees at a national conference on HIV in 

ethnic and racial minority communities. 

Survey 

The questionnaire includes four major sections with 

subcategories. By some sociological and statistical 

standards, the method of demographic data collection used in 

this study might be considered imprecise. However, as one of 

few efforts to collect this kind of information from lesbians 

1 
in AIDS, I decided to rely on the participants' own 

definitions and categories rather than limit the 

possibilities to standard categories. I trust that this 

approach will show its value during the discussion of the 

results. 

Demography 

This section is comprised of eleven questions which 
relate directly to the participants' personal characteristics 
and community affiliations. The questions were written in 

60 



order to extend an option to participants to reveal their own 
social location. Therefore, very few questions gave sample 
answers or asked the participant to check one choice from a 
list of possibilities. As stated above, 125 surveys were 
sent directly to women at AIDS organizations around the 
United States. I received 34 completed surveys, reflecting a 
27% response rate. Twenty-three participants (67%) work and 
live in Massachusetts; ten participants work in California 
(1), Georgia (1), Illinois (1), New York (2), Vermont (1), 
Virginia (1), Texas (2) and Washington, D.C. (1). The 
location of one participant is unknown. 

Age : While one's age itself may not be the most 
prominent lens through which a participant would view her 
AIDS work, I felt that this data had the potential to be 
illuminating on a comparative basis. However, age has tended 
not to be as significant a variable as race, gender and class 
relationships, or even length of time living or working in a 
particular place or field. The range of respondents by age 
is found in Table 1. 

Table 1. — Age 
n = 34 



25 - 29: 4 [12%] 

30 - 35: 12 [35%] 

36 - 39: 10 [29%] 

40 +: 8 [24%] 

Total: 34 [100%] 

61 



Racial/ethnic Identification: The question 
regarding racial and ethnic origin simply asks for "Your 
racial/ethnic identification." I believe that how a 
participant Identifies her own relationships to race, class, 
gender, and community can be very significant, therefore, 
wherever possible, questions avoid prefabricated categories. 
Racial/ethnic information is useful in understanding the 
relationship of participants to their work and to various 
communities, including the gay community. 

Some respondents described their racial/ethnic 
background as Caucasian. For clarity's sake, I grouped 
"whites" and "Caucasians" together. One woman identified her 
racial/ethnic heritage as Jewish, while the five other Jewish 
women identified as white. Among sociologists, I found that 
Jewish heritage is generally considered a religious or 
cultural background. However, I have found that many Jewish 
lesbians feel a strong, often primary, ethnic identification 
as Jews. Therefore, I have included this category under race 
and ethnicity, identifying that single participant. 

Table 2 . — Race and Ethnicity 
n = 34 

Black/African American: 2 [ 6%] 

Jewish: 1 [ 3%] 

Latina: 3 t 8%] 

Multi-racial: 2 [ 6%] 

White/european: 26 1 76% ] 



62 



There were no participants who named an Asian or Native 
American heritage. Latinas include Chicana, Mexican and 
Puerto Rican women. Two participants who indicated a multi- 
racial background have an African/Hispanic and 
Jewish/Italian/Cuban heritage. 

Sexuality or sexual orientation ; Despite the fact 
that all correspondence used the term lesbian to define the 
study group, I asked the participants to describe their 
sexuality or sexual orientation. Lesbian, in this study, 
includes women whose primary erotic and emotional attachments 
are to other women, regardless of the gender of their current 
or most recent sexual partner. Given that, women whose 
sexual partners include men or who describe their sexual 
orientation as bisexual are included. I am aware that some 
lesbians, feminists and sociologists would denounce this 
decision on a variety of grounds. Having a lesbian identity 
has different personal and political meanings for individual 
women. This study attempts to start with the participants' 
own self-definition. As with the information regarding 
racial and ethnic background, I have attempted to avoid 
imposing my own assumptions about the individual's sexual 
self-definition. Therefore, I have not asked participants 
to justify their use of the term lesbian with additional data 
about sexual partners or practices. Having made that point, 
all but two participants described their sexual orientation 
as lesbian. One woman describes herself as bisexual and 
another as a "dyke." 

63 



class background and education; This Is, 
perhaps, the most complex data to interpret in the survey. 
Of all the questions, it lends itself least to a simple 
answer. Class status is not easily defined, especially in 
the United States which is fabled to be a "class-less 
society" and in which a high percentage tend to describe 
themselves as middle class. A number of elements create the 
dynamics which define one's class sensiblity and social 
status. These elements include, but are not limited to, 
economic income, lifestyle, education, social comportment or 
manners, inter-personal relationships or social circle, 
social distance, values, political and religious 
affiliations, motivations, expectations, and ancestry. 

Unique class strata can also exist within different 
communities, representing particular community values. For 
instance, in the African American community, a distinction 
can be identified between the street class and the working 
class, recognizing the influence and economic power of 
Income that is acquired through illegal or marginally legal 
means against the status and income acquired through legal 
employment as defined by the white majority. In the lesbian 
community, there are class distinctions which reflect the 
value of political affiliation and involvement. A lesbian 
can be a leader in her community despite a subsistence Income 
or low educational level. 

The survey inquires only about class background, 
education and current income, in order to touch upon the 

64 



class awareness of the participants and examine the 
relationship between her educational level, class background 
and her AIDS work. This information can eventutally be used 
to make Individual or group comparisons. Each lesbian was 
asked how she describes her class background. Only one 
participant responded, "I don't." Tables 3, 4 and 5 portray 
the statistical results of answers on class background, 
education level achieved and current annual income among the 
full-time AIDS workers. 

Table 3. — Class background 
n = 33 



Upper working/ 
lower aiddle 37. 

Lower working/ 
working poor / *.i 



Lower aiddle 




Upper aiddle/ 
lower upper 



65 



Table ii. « Bdueafelen Level Achieved 

n = 34 



College degree 



Soie college 
•3Z" 




College degree 



or cert. 



Table 5. — Full-time Income from AIDS Work 

n = 28 



Income Race/Ethnicity 

Afr-Amer Latina Multi Jewish White Total 



$20K - 23K 
$24K - 35K 
$36K - 55K* 



1 
2 



2 

9 

10 



2 [10%] 
12 [41%] 
14 [48%] 



*six of the lesbians in this category are practicing nurses; 
others are program or institution directors or physicians. 



Sixty-six percent (22) of the participants described 
their background on a middle class continuum from "upper 
middle-lower upper class" to "upper middle" to "upper 
working-lower middle." The other 34% (11) describe their 



66 



background as working class or blue collar. While 
participants went to varying lengths to be specific (e.g. 
upper working-lower middle class), neither the criteria nor 
parameters of class are clear. It was evident from the 
responses that there is a vast but uncertain array of 
definitions of "middle" and "working" class. In fact, in 
some cases they were viewed synonymously, as in 
"working/middle." Because of this lack of clarity (which was 
not unexpected), the responses to this question are only 
useful in confirming that we are still muddling through our 
understanding of class status. 

The data about education level is quite revealing in 
light of the data about class. All of the participants 
(100%) have attended at least one year of college. Ninety- 
seven percent have earned college degrees, either in the U.S. 
or elsewhere. Among the college graduates, 32% (11) women 
had nursing certificates or degrees. One participant was a 
physician, one a lawyer, several had degrees in public 
health. There is a suggested correlation between reported 
class background and education level achieved. Of the 17 
respondents who earned graduate degrees, 35% were from 
"working class" or "working poor" backgrounds. Of the eight 
who reported an "upper middle" class background, 37% (3) had 
earned graduate degrees. 

Of those who reported that their total income came from 
AIDS work, nearly half (48%) earn between $36,000 and 
$55,000. Because of the small overall sample, no 

67 



generalizations can be made about the Income of lesbians who 
do AIDS work. However, I was surprised that only 10% of the 
respondents earned less than $24,000. This might be 
explained by the small sample, the professional capacities of 
the participants and that only a small percentage reported 
working In community AIDS organizations. Most respondents 
work in government sponsored or funded agencies. Positions 
funded by these grants generally support adequate salaries. 
Small independent community AIDS agencies tend to struggle 
with low salaries if private or government funding is not 
available. Another reason to suspect these high salary 
figures is the fact that I acquired the names and addresses 
of study members from lists of conference attendees. Only 
individuals and agencies that are adequately funded can 
afford to attend these conferences. More research needs to 
be done in this area. 

Religious tradition; Participants were asked to 
indicate whether they were raised in a religious tradition 
and to name it. A change in religious affiliation from 
childhood to adulthood can be anticipated among lesbians 
since most Christian and Jewish denominations condemn 
homosexuality. Table 6 (on the next page) outlines the 
participants' responses by racial and ethnic background. 



68 



IikL§ It II ?gLUL2U5 lickground 
n = 34 



Religion Race 

Af-Aier Latina Hulti White Jewish Total 



Catholic 1 

Protestant* 1 

Jewish 

Other" 

None 



♦Includes Episcopal, Methodist, Lutheran, Presbyterian, 

Unitarian and Quaker 
"Includes Christian-Islai 



- 


10 


-- 


14 [41X1 


- 


10 


~ 


11 [3211 


- 


5 


1 


6 C 187.3 


i 


— 


~ 


1 [ 3Z1 


1 


1 


— 


2 [ 6X1 



Present religious affiliation or spiritual experience: 
Anticipating a wide variation among the participants, I asked 
how they describe their present spiritual or religious 
experience or affiliation. Feminist spiritualities 
incorporate elements from numerous traditions, drawing on 
ancient goddess cults, astrology, and meditation as well as 
Christian, Islamic, Buddhist and Judaic faiths. This 
question was phrased in order to give maximum latitude to 
lesbians who do not identify with a particular community or 
tradition. 

Spirituality is a foundation for making meaning out of 
human experience. Given the profound questions, challenging 
situations and ongoing loss that living and working with 



69 



people with HIV and AIDS conjure, the Importance and the 
role of spirituality In these women's lives is relevant. 
Table 7 outlines the spiritual practices reported by the 
study group. 

I§ble l L ~ Present Rel igious Practice by. Race/EthnUity. 

n = 34 

Practice Race 

Af-Aier Latina Nulti White Jewish Total 

Christian -- 1 -- 5 -- 6 [181] 

Jewish - 1 1 2 [ 6X1 

None 10 -- 10 [292] 

Native Ad. ~ -- 1 1 — 2.1 6X1 

Eclectic/ 
Personal 1 2 1 4 -- 8 [2«] 

Other* 1 5 — G [18X1 

♦Includes pantheist, Siddha Yoga, vicca, letaphysics, 
paganisi and leditation 

Seventy-three percent of the participants report a 

Christian upbringing and 18% Jewish. Only 18% are 

currently affiliated with a Christian or Jewish faith. 

Forty-two percent report that they practice an "eclectic," 

personal, or other spirituality. Table 8 compares former 

religious practice with current affiliations. There are some 

striking results. 



70 



I3&I§ ii :: Current Religious Practi.ce Cojgared with 

EsLiai2!i§ i§ckaL2!iQ^ 

n = 34 



Current Forier 

Catholic Protestant Jewish Other None Total 



Christian 


3 


3 


— 


— 


— 


6 C18X3 


Jewish 


~ 


~ 


2 


— 


— 


2 [ 6X1 


None 


2 


4 


4 


-- 


~ 


10 [29X1 


Native Ai. 


— 


1 


— 


— 


1 


2 [ 6X1 


Eclectic/ 














personal 


4 


2 


1 


1 


— 


B [24X1 


Other 


4 


1 


~ 


— 


1 


6 [18X1 



Only two women, both Jewish, report a continued 

affiliation with the religious tradition of their childhood. 

One 30-year old, white Jewish lesbian described her 

spirituality in this way: 

Jewish identity — primarily 'cultural 
Judaism.' Observe major holidays. Also 
do somewhat of an eclectic mix of meditation 
and Eastern spiritual practices (Tai chi) 
and some 'women's spirituality.' 

Those who were raised Catholic and Episcopalian were 

the most expressive of their feelings and thoughts about the 

church they left. Among these comments (all from white 

women) : 

Non-sectarian humanist with an antipathy 
to organized religion. 

*** 

Alienated from organized religion due to 
church oppression of gays. I believe in 
God and I pray to her, do not miss 
communal spiritual experiences. 

*** 

Christian generally, but very anti-Catholic. 



71 



other responses from catholic women reflect the 
importance of spirituality outside the church. Among the 
former Catholics a number of spiritual practices were named 
including pantheism, Siddha yoga, Unitarian Unlversalism, a 
non-denominational church and twelve-step programs. Both a 
Latina and a Black woman, former Catholics, indicated that 
they consider themselves spiritual but not religious. 
Finally, a Mexican respondent stated, "I pick and choose from 
a variety of indigenous traditions and some Mexican Catholic 
traditions." 

Participants who were raised in a Protestant or Jewish 
tradition were much more matter-of-fact about their answers 
and offered very few comments regarding their current 
practices or affiliations. 

Disabilities: Physical and mental abilities and 
impairments shape, in part, how people experience the world. 
Many disabling conditions and injuries are invisible. It is 
not uncommon for those who have had extensive experience with 
the health care system due to a disability or long-term 
illness to become a health care provider. I had no idea 
whether this would be significantly related to AIDS work. 
But in using a feminist liberation methodology, I wanted to 
incorporate the embodied nature of knowing and experiencing 
all reality and, particularly the reality of the HIV/AIDS 
epidemic. It is through our physical and mental conditions 
and situations, abilities and disabilities that we forge a 
relationship with the world and one another. 

72 



Participants voiced an exciting range of perspectives 
on their experience of and notions about disability. Twenty- 
four percent of the respondents reported disabilities 
including asthma, nearsightedness, lupus, epilepsy, 
blindness, a prosthetic limb, back problems. A survivor of 
sexual, emotional and physical abuse cited this as a 
disability. Offering an overt political analysis, one 
lesbian responded, "I live in a state that carries a sodomy 
law. Yes, this disables me." Only one participant, a nurse, 
referred to her disability in reference to her work saying 
that she had spent a "certain amount of time in hospitals as 
a child." It is not clear from the surveys whether or how 
these women's own experience of disabilty influences their 
AIDS work. This warrants further study. 

Other background information: Because there are are 
important aspects of a participants' frame of reference that 
might not be anticipated, I included an opportunity for 
respondents to provide additional information. A rich range 
of responses included growing up in a small town, living in a 
multi-ethnic family, being bi-racial, fourth generation 
Bostonian, living with a life-threatening illness, surviving 
a near-fatal car accident and having a family history of 
cancer, being a Southerner, an army brat, a % Red Diaper 
baby', a motorcyclist, an orphan, and an adult child of an 
alcoholic. A Puerto Rican participant described how her 
working class family "struggled and worked hard to give me an 
education." This additional Information completes a vibrant 

73 



picture of this diverse assemblage o£ lesbians doing AIDS 
work. 

What Lesbians are Doing 

For this study, AIDS work is defined broadly. Given 
the exploratory nature of this survey, I wanted the study 
group to self-Identify. That is, if a lesbian feels that 
she Is doing "AIDS work" in a setting which is not AIDS- 
specific, or part of the so-called AIDS Industry, her 
identification with AIDS work is significant. In designing 
the questionnaire, I assumed that participants would come 
from a broad range of job settings and responsibilties . 

The fields of work among the participants can be 
categorized as follows: 21% (7) in research, 18% (6) in 
medical or nursing care, 6% (2) in holistic care, 24% (8) in 
mental health or counseling, 38% (13) In education, 47% (16) 
in program direction or administration, and 3% (1) in 
substance abuse treatment. 

While these statistics indicate that lesbians are 
involved in every aspect of HIV/AIDS services, I doubt that 
this is an accurate representation of all lesbians in AIDS 
work. Due to the fact that a high percentage of the study 
participants are from the Boston area, which is a medical and 
a major HIV research center, I suspect that the percentage of 
lesbians involved in research is higher than in most other 
areas of the country. Also, a high percentage of these women 
work in an coordinating or managerial capacity. Most of the 



74 



respondents couple a primary job function with another, such 
as administration or education. AIDS workers wear many hats. 

Participants were encouraged to describe their work in 
their own terms: How she understands her workplace's 
mission, her job responsibilities and the community with whom 
she works most closely. 

A nurse at a large inner city hospital described her 

work this way: 

Most of my work is AlDS-related. As a 
staff nurse, I triage patients — 
assessing how they are doing physically 
and emotionally, draw blood, order lab 
tests, start IVs, give transfusions, 
infusions, hydration and chemotherapy, 
coordinate patient care with outside 
[community and AIDS service] agencies. 
I speak (read and write) French and 
Spanish fluently, so my nursing involves 
an emphasis on working with Haitian and 
Hispanic patients, especially those 
who don't speak English. 

A social worker, and mental health coordinator with a non- 
profit, private AIDS social service agency wrote: 

I have been charged with devising and 
implementing a mental health program 
for PWAs. Currently I do psycho-social 
evaluations of self-referred PWAs, treat 
them myself individually or in group 
therapy or appropriately refer. I also 
run a shelter for Indigent PWAs. 

Any one of these responsibilities might be a job unto itself 

in a field un-related to AIDS. However, in the development, 

funding and delivery of AIDS/HIV services, people are often 

in the position of building whole programs, sometimes 

singlehandedly. 

These lesbians work with many different groups and 

75 



communities including women, people of color, substance 
abusers, gay men, lesbians, prisoners, women, men and 
children with HIV infection (inpatient and outpatient 
settings), adolescents, families, Latinos, Black women, 
health care workers, Haitians, and victims of violence. They 
do psychotherapy, facilitate support groups, take political 
action, develop and plan public policy, practice acupuncture 
and other holistic health care, provide HIV testing and 
counseling, run telephone hotlines, coordinate community 
agencies, develop educational materials, care for people with 
AIDS at home, help addicts access treatments and educate 
about safer sex. 

Forty-one percent (14) work in community agencies, 23% 
(8) work for governmental agencies, 15% (5) work in state or 
city hospitals, 15% are self-employed in a private practice, 
8% (3) work in AIDS organizations, and 6% (2) are employed by 
a private hospital or health maintenance organization (HMO). 
Nearly the full range of the "AIDS industry" are represented 
except for pharmaceutical manufacturers and the military. 
Some of the respondents work for more than one agency and 
many have working relationships with private and public 
organizations and other arms of the health care system. 

Many people who work in health and social service 
agencies do AIDS work either as part of or in addition to 
other duties. This is true, for instance, of those who 
administer a number of educational programs, social workers 
who have several clients with HIV infection and nurses who 



76 



work on medical-surgical units in hospitals. 

Many lesbians who so AIDS work are also community or 
political activists. In addition, some AIDS workers also 
volunteer in AIDS-related activities such as public 
education, facilitation of support groups, serving on 
advisory boards or reviewing funding proposals. A little 
more that half (52%) of the sample group devote between 2 and 
100 hours per month to volunteer activities; the average 
number of volunteer hours reported is six. While some of the 
hours are directly related to AIDS (especially education), 
lesbians also contribute to reproductive rights, progressive 
Central American liberation movements, electoral politics, 
professional associations, advisory committees and boards of 
directors in community organizations. Some lesbians who are 
in private practice provide mental or holistic health care at 
no cost to people with HIV. No one reported taking care of a 
friend or loved one as a "volunteer" activity. I regret that 
a question about involvement in the personal care of someone 
they know was not included in the survey. 

Initial experiences and primary motivations 

People have complex relationships with their work. For 
some it is a practical and economic necessity alone; for 
others it meets needs for community or helps to carve out a 
sense of meaning in life. These same factors Influence 
lesbians' decisions about work choices. Several survey 
questions address initial motivations, perceptions of 



77 



community opinions, personal risk factors for HIV infection 
and current motives for doing AIDS work. 

I expected to find a relationship between the date of 
a lesbian's first involvement and her reasons for doing AIDS 
work. Because the epidemic appeared first in the gay 
community In most areas of the United States, I expected that 
lesbians who became involved very early (1981 - 1983) would 
have been connected either with gay men or to health care 
provision and that those who began later would have more 
diverse points of entry. This hypothesis has proved correct. 

1981 - 1983 . Among the respondents, 32% have been 
working in AIDS for seven to nine years, having entered the 
field between 1981 and 1983. All eleven of these women are 
white. Over half (54%) first became Involved because of 
their relationship to the gay community and also political 
action. Forty-five percent were Involved in health care at 
the time of their entry into AIDS work. And eighteen percent 
of these eleven reported that personal losses influenced 
their decision. They describe a commitment that developed 
out of a deeply personal and political experience of 
AIDS/HIV. 

A physician who became involved in 1981 writes: 

It was clear that it would disproportionately 
impact on our % community' — the early [New 
England Journal of Medicine] language was 
prejudicial and value laden ( *promiscuity, ' 
etc.) and was clearly setting off certain 
*victims' as guilty. The potential for 
discrimination was immediately apparent. 
I had been a women's health activist 
before medical school. It was clear I 



78 



needed to bring my skills and my 
commitment to the struggle. 

A psychologist in private practice described her 

initial interest this way: 

Political motivation — saw potential for 
intensified discrimination, wanted to 
fight against it. Also, wanted people with 
AIDS to feel more supported, less isolated. 
Needed to find lesbians and gay people who 
were similarly concerned, for my own 
support needs. 

A nurse with a history of gay and lesbian activism 

dating back to 1971 wrote: 

A close friend was diagnosed in November, 
1983. Several others followed. I was 
on a [gay organization's] board of 
directors and we recognized the 
importance of the gay community building 
a response in the absence of the 
government and or medical community 
doing so. 

One hospital nurse relates her desire to combine her 

interest in AIDS and the gay community with a satisfactory 

work schedule and environment. Her comments also reflect 

some of her frustrations about rotating hospital nursing 

schedules. 

I've always had a pretty good rapport 

with tl.V. drug users! ... I felt 

I could use my two other languages 

more effectively working with AIDS 

patients, particularly at [this hospital] 

which has a high percentage of non-English 

speaking patients. I wanted to work in 

an area of [the hospital] that was supportive 

of gay people. I really wanted a job 

that was Monday - Friday — no weekends, 

holidays, evenings or nights — but I 

wanted a job that's interesting. And 

AIDS is interesting. 



79 



1984 - 1986 . Twenty percent (7) of the study group 

started working in AIDS sometime between 1984 and 1986. Five 

women are white, one Jewish and one Puerto Rican. A higher 

percentage of this group gave multiple reasons for becoming 

Involved. Seventy-one percent mentioned their commitment to 

the gay community as a primary motivation. Personal loss, 

politics, commitment to women and prior health care work were 

named by twenty-eight percent of those who have been involved 

in AIDS work for the past four to six years. The Latina 

respondent stated that she had become involved through her 

experience with gay men, the Latino community and working 

with substance abusers. 

When I started working as the supervisor 
of an outpatient program I started 
facing the reality of the magnitude of 
this disease and how it was affecting 
not just gays but I.V. drug users and 
their partners being at risk of 
contracting the Infection. 

A white lesbian who works as an advocate and AIDS resource 

for prisoners states her primary motivation as 

Outrage over the discrimination, neglect, 
and stigmatization experienced by people 
with AIDS. I got to know many gay men 
who had AIDS and HIV-infection during 
the organizing for the March on Washington 
for Lesbian and Gay Rights. 

A 30-year old white lesbian described involvement in AIDS 

work as related to her coming out process. She had done 

hospice work as a volunteer and "coming out as a lesbian in 

'82 - '84, it made sense to me to continue to do 

soclo/political work in AIDS." For some women, AIDS combined 



80 



their professional skills in health care and their desire to 

work in the gay community. A nurse who is now doing 

community education with a state health department writes: 

AIDS was hitting the gay male community. 
As a lesbian, I felt compelled to work 
on the issue. I knew nobody else was 
going to do anything. I started by 
volunteering on hot lines and doing 
volunteer education. I found that not 
only did I feel that I was putting my 
energy in a good place (AIDS work) but 
that I also really loved and was good 
at the work. 

1987 - 1989 . Nearly half of the study group has been 
working in AIDS for three years or less, having begun between 
1987 and 1989. Eighty-six percent (six out of seven) of the 
women of color in the study began AIDS work during that time 
and sixty-two percent (10 out of 16) of the white women. 
Their primary reasons for becoming involved in AIDS work are 
more evenly distributed over a spectrum of concerns. A 
higher percentage (31%) of these women, compared to those who 
began AIDS work during 1981 through 1986, reported personal 
loss as primary motivator. A lower percentage (37%) saw gay 
community interests as an important catalyst. The African 
American, Latino and multi-racial women reported personal 
loss, concern about discrimination against people of color 
and women as primary motivators. White women more often 
named general political concerns or health care work as 
instrumental in deciding to enter AIDS work, although a few 
did refer to AIDS as a fundamental "social justice" issue. 

An AIDS writer /educator with a multi-ethnic background 

81 



was moved by personal and community losses: 

As a lesbian with many gay male friends, 
I've been Impacted by AIDS, not only by 
having lost friends and acquaintances, 
but by the 'aura of loss' in the gay 
community. I experience powerful 
feelings of sadness about the loss 
of certain individuals and contributions 
to gay culture. And I felt a strong 
political pull to do AIDS work. My 
original involvement focused on women 
and AIDS, not gay men, however. 

A coordinator of Latino programs recalled the lack of 
information in her home country, Mexico, that led to the 
death of a friend's lover "presumably of AIDS — due to a 
lack of attention by nurses and doctors afraid to be 
infected." She wrote that he was never confirmed HIV- 
positive, "but was unlucky enough to be very effeminate and 
to get pneumonia." 

Some lesbians have made connections between prior work 

in politics or health care and the AIDS epidemic, particular 

the women's health movement. A California AIDS education 

director thought that AIDS work might effect change and also 

directly help her community: 

I had been working in a women's health 
collective for 10 years — mostly doing 
abortion-related work. I felt like I 
was patching women up and sending them 
out to be screwed (over) again. I 
didn't feel much direct benefit as a 
lesbian, although I felt committed as 
a woman/feminist. AIDS offered me 
the chance to work against homophobia 
in the health care system, to raise 
community consciousness about gay and 
lesbian issues, to redefine *family.' 

Others also wrote of hoping to use AIDS as a way of changing 



82 



the homophobia in the health care system or at least protect 
patients with AIDS. Another nurse heard a homophobic 
presentation at an AIDS conference which "[made] me want to 
do AIDS work so that the patients did not have to deal with 
homophobia — they have enough to deal with." 

Two participants became involved in AIDS because of 
their relationships with other women doing AIDS work. One 
lesbian, now an AIDS educator, says that when she and her 
partner first became involved, "I supported her through three 
illnesses and deaths of friends. We attended many other 
memorial services for acquaintances." Another woman, working 
in AIDS for six months had friends who had been doing AIDS 
work. She had been hearing about "the challenges and 
commitment involved. I also had an old friend die of AIDS, 
with many more at risk. I felt compelled to find some way 
that I could take an active direct role." 

Summary. For all of the lesbians surveyed, the 
decision to enter AIDS work occurred as a result of being 
personally affected by AIDS/HIV in some way. For some it was 
a way to mourn or ameliorate the grief of personal loss. 
Many channeled their outrage at racist and homophobic 
responses to people with AIDS into their work. For others, 
AIDS work was an opportunity to "integrate . . . queer and 
professional identities in a way no other job could." A 
consistent theme raised by these lesbians is the desire to 
make a difference in the lives of people with HIV/AIDS, a 
particular community, or the health care system. Lesbians in 

83 



this study saw the personal benefits of doing meaningful work 
combined with the potential good that could be served through 
their own efforts and those of other lesbians. 

Community encouragement/discouragement ; At the 
beginning of the AIDS epidemic many people received criticism 
and discouragement from family and friends for becoming 
Involved in AIDS work. Stories of nurses left by husbands 
and lovers for fear of contagion circulated widely. Lesbians 
who chose to do AIDS work challenged the prevailing community 
attitude that AIDS was not a relevant issue for lesbians. As 
a "gay men's issue," AIDS work was characterized as working 
on behalf of the patriarchy. With this question I hoped to 
begin to document the extent to which lesbians received 
support and validation for the AIDS work they took on. 

The respondents were overwhelmingly positive in noting 
the support they received for taking their first steps into 
AIDS work. Most report receiving significant support from 
lovers, friends (within and outside the lesbian community) . 
Most discouragement received from friends or family took the 
form of concern about stress or the possibility of becoming 
infected at work. One nurse working at a gay and lesbian 
health center reported that her family worried about exposure 
to AIDS and whether she would be able to find another job 
once she became associated with a "known gay organization." 
Some lesbians report that their families gave absolutely no 
support and some were actively discouraged from taking on 
AIDS work. Most lesbians who reported family's concerns 

84 



echoed the sentiments In this quotation: 

My mother expressed overt concern about 
transmission, and the emotional toll she 
feared it would take on me. 

In the midst of identifying the positive support, some 
participants minimized the real lack of support that was 
available to them in their communities. One Latina wrote 
that when she arrived in the midwest, "there was only one gay 
Latino undertaking the job of bringing conscience to the 
homophobes, so he supported (read drafted ) me." Having only 
one person's support was viewed as enough to sustain her 
efforts in the face of sparse emotional and financial 
resources. 

While the study group reported receiving support from 
the lesbian community, in general, two women indicated that 
some lesbians "didn't understand why I wanted to work 
with/* for' men." Both of these lesbians became involved in 
AIDS work in 1983 and 1984. No one who started AIDS work 
after 1985 reported significant discouragement or lack of 
support from personal friends or family. 

Current Sources of support. I developed instrumnet 
that would allow participants to identify the relationships 
from which they expect and receive support and their level of 
satisfaction. One weakness in the instrument is that it does 
not require the participant to define the nature of the 
support received or wanted. Also, no room was left for 
participants to make additional comments. Several 
respondents wrote in the margins to clarify their answers. 

85 



in this section, I will highlight the significant results. 

Overall, the sample group reports a very high level of 
satisfaction with their support systems. Eight-six percent 
cited the support of their lover and of other women as being 
very important sources of support. While 81% are very 
satisfied with support received from lovers, only 57% feel 
they get the support they need from other women. Ninety 
percent of the respondents view the support of co-workers as 
very important. Everyone in the study group reported being 
very or somewhat satisfied with support from their colleagues 
or other AIDS workers. 

In earlier survey questions, many lesbians commented on 
the presence or absence of family encouragement in beginning 
AIDS work. However, 24% report that family support of their 
work is unimportant. The majority (67%) state that family 
support is somewhat important. A little over half (57%) are 
somewhat satisfied with the support received from family; 14% 
are very satisfied. One health care provider commented, "I 
am very satisfied that my family is completely uninvolved 
with my work." Unfortunately, not enough is known about the 
overall relationship of these women with their families 
outside of AIDS work provide a context for these responses. 
While, I believe these comments are valuable, more 
information is needed to understand the importance of family 
and community support to lesbians in other contexts before we 
can intrepret the role of these supports in AIDS work. 

The same holds true in understanding the role of 

86 



religion or spirituality as a resource for AIDS work. 
Seventy-two percent of the respondents indicated that 
spirituality or religion was either a very or somewhat 
important source of support to them. Twenty-nine percent 
(10) of the study group stated that religion or spirituality 
was a very important resource for them. Significantly, all 
of these lesbians are "very satisfied" with their spiritual 
support. Of the ten (29%) women who found spirituality 
somewhat important, only two are very satisfied with their 
situation. 

I looked at the data on religious background and 
current spiritual practices more closely to see if any 
patterns emerged among those for whom spirituality is very 
important. The two most prominent features of this group are 
their racial and ethnic composition and the cluster of former 
Catholics. Five out of the seven (71%) women of color 
participating in the study indicated that they were very 
satisfied with their spiritual resources. Three of them were 
raised in the Catholic church, the other two have 
Christian/Islam and Baptist backgrounds, respectively. Seven 
of 26 (27%) white women are very satisfied. Five of them 
were Catholics, of the other two, one was Methodist and the 
other was not raised with any religious tradition, but now 
practices wicca. 

Sixty-six percent (8) of all respondents who are "very 
satisfied" are former Catholics or incorporate some aspects 
of Catholicism in their current spirituality. All of the 

87 



lesbians in the study who are content with their spiritual 
resources have discovered their own spiritual journey which 
may combine elements of their religious heritage with other 
spiritual, philosophical, or cultural resources. The fact 
that a high percentage of these lesbians are women of color 
and have Catholic backgrounds raises some questions that need 
to be pursued more carefully if we are to arrive at a clearer 
understanding of the relationships between a lesbian's 
spiritual journey and growth and her cultural-religious 
heritage. It will also be important to investigate the ways 
that spiritual resources play a role in sustaining lesbians 
in AIDS/HIV work, specifically. 

Impact of personal risk for HIV : Most gay men and 
recovering addicts have entered AIDS work as a result of 
insight into personal experiences of risk and loss of loved 
ones due to HIV/AIDS. Working in AIDS can be a way of 
building on one's recovery or giving back to the community. 
I suspected the same things might be true of lesbians who 
were in recovery from addiction or had experienced loss from 
AIDS first hand. 

Lesbians have been invisible in most epidemiologic 
reports on the epidemic. There is very little scientifically 
valid information about the relative risk of sexual 
transmission between women or the numbers of lesbians who are 
infected with HIV. Most lesbians who are HIV-infected are 
presumed (by scientists) to have injected drugs, received 
transfusions, or had intercourse with an infected man. 

88 



Lesbians who are living with HIV infection and their 
partners struggle with the same issues that other women with 
HIV face such as inadequate medical knowledge about the 
course of HIV In women, few women's support resources and the 
threat of economic losses. Lesbians with HIV, however, 
suffer additional isolation because AIDS/HIV health and 
service providers are subject to the same heterosexlsm and 
ignorance about lesbians as the rest of the medical 
establishment. 

The risk to lesbians from sex with women is thought to 
be low, but precautionary sexual practices such as the use of 
latex barriers during oral sex are recommended by public 
health officials. Lesbians in hospital and laboratory 
settings are subject to risk of infection through some 
medical procedures or blood and body fluid splashes. For 
AIDS workers there are psychological hazards in living with 
the changes in one's own sexual practice and the stress of 
facing death and loss young friends, clients and colleagues. 

Ten respondents (29%) reported that their risk of HIV 
has not affected their work. Five lesbians (17%) stated that 
they have been tested for HIV; none showed evidence of 
infection. The remaining eleven (22%) discussed their 
feelings about their own risk for infection at work and in 
their personal lives. No one in the sample revealed an HIV- 
positive status, although several feel they are at risk; and 
no one reported a history of intravenous drug use. 

AIDS workers bring their health and sexual histories 

89 



with them into work. Immersion in AIDS work can bring 

worries about medical problems, sexual practices or partners 

and drug use to the fore. Stressful work and personal 

concerns led a state health department educator to be tested 

after two and a half years on the job: 

My results were negative even though my 
risk factors were fairly high. Prior to 
testing, my work was getting increasingly 
stressful because of my own fears — they 
were definitely compounded by the work. 
Since testing negative, I have not had 
the same stress. I definitely have a 
deep appreciation for the testing process 
(stress, fear, despair) after having gone 
through it myself. 

A state health program administrator worried about her health 

because of past sexual contacts when she became very sick for 

six months. She wrote that "this has increased my concern 

and empathy for those who have become ill." 

Others talked about "denial" as a coping mechanism in 

doing AIDS work, or using the absence of risk as a tool in 

their work. A research nurse who has been practicing in 

AIDS/HIV for six years wrote, "my denial due to feelings that 

I am * immune' has made me able to do the work I do." Another 

lesbian, an administrator, stated: 

It has either made me more complacent at 
times, because I am part of a very low 
risk group. Or sometimes I think it has 
given me more strength and energy because 
my personal and social life has not been 
as devastated. 

A psychotherapist who works with with HIV-positive male 

clients felt that this was a difficult question for her; she 



90 



tries to use her own life situation in working with clients: 

I consider myself to be at relatively 
low risk. Perhaps this allows me to 
feel less threatened or afraid about 
my own health status when working with 
clients, i.e. when clients discuss their 
concerns about their antibody status or 
are, in fact, positive, this stirs up a 
tremendous amount of feeling in me about 
my client (as well as certain friends and 
acquaintances) but not so much about 
myself. I might have more difficulty 
doing this work if I knew I was positive 
or likely to be positive — not that I 
find the work easy. 

Another lesbian finds her health status and sexual experience 

to be problematic in her work as an health educator at a 

large urban hospital: 

In my complete lack of risk, I have often 
felt apart from the mainstream concerns 
of most of the people I educate. Teaching 
people about safer sex, condom use, etc. 
has often felt strange since I've never 
had sex with a man. 

Two participants expressed profound experiences of the 

impact of AIDS/HIV on their personal lives. A nurse whose 

involvement began very early in the epidemic related a 

frightening discovery: 

My lover had been inseminating with the 
semen of our friend who was diagnosed 
with AIDS in '83. She inseminated for 
a year from '81 - '82. This made us feel 
very much a part of the fear and anxiety 
our brothers were feeling. We followed 
closely all the debates about testing. 
(She finally decided to test in 1987 
and was HIV-negative. ) 

An educator who became involved with women's HIV 

concerns in 1987 feels a personal risk connected more to the 

losses she experiences than to possible infection: 



91 



I am increasingly aware that AIDS could 
happen to anyone, myself included. But I 
can't say that a personal sense of risk 
of HIV motivates me. A sense of risk 
about living through an epidemic, 
experiencing massive loss on many 
levels — these things do motivate me 
to pursue this work, although I do not 
plan to do AIDS work for more than a 
couple more years. 

Health care workers who are involved in direct patient 

care talk matter-of-factly about their work related risks. 

They indicate an awareness of the risk inherent in their 

profession. A research nurse who entered AIDS work in 1989 

voiced a common theme: 

I'm careful when drawing blood and 
handling sera. As an RN, the risk 
has been there in all my past jobs 
— the difference with my present 
job is that I know the antibody 
status of all my patients. . . it's 
not something I'm conscious of 
every day. 

Behind the acceptance of the risk of infection to 

health care workers, there is also an undercurrent of 

concern. When a health care worker sustains a needle stick, 

she must confront her own anxiety and reassess her life 

situation including sexual practices. A nurse who moved to 

AIDS work from a background in oncology describes the ordeal 

of a needle stick: 

That is a difficult aspect of the 
job and one I dislike (almost hate) 
the most. I have been stuck three 
times starting in August 1985. We 
use needles all the time. I try to 
be careful. I've tested negative. 
It has been almost one year since 
my last stick. But when it happens, 
it bums me out for one to two weeks. 



92 



Then there is the Inconvenience of 
having to get tested for six months 
. . . Also the delicate problem of 
having to bring up the subject of 
being at risk to a partner. Although 
I have not had many partners, I am 
not currently in a stable relationship 
and I've had to bring it up to two 
partners. One woman was a little 
freaked out. It increased her anxiety 
level. The other woman was another 
nurse — who was also at risk at the 
time we were seeing each other. She 
was not too concerned — we were in 
the same boat. 

Summary* While health care providers appear to accept 
risk of infection as part of their work, accidents raise 
considerable anxiety and disrupt their personal lives to some 
extent. AIDS workers develop emotional and psychological 
tools with which to manage the realities of personal loss and 
accidental infection. Particular difficulties manifest 
themselves for sexually active lesbians who must negotiate 
sexual practices in light of their risk and in the absence of 
definitive public health guidelines. Interestingly, only one 
other respondent indicated that AIDS had affected her sexual 
life directly. She said that she is commited to practicing 
safer sex and promoting it among other lesbians. I regret 
that I did not ask direct questions about the impact of AIDS 
on lesbians' sexuality. Follow-up interviews will be useful 
in drawing out these issues. 
Community and Interpersonal relationships 

Psychologists at the Stone Center at Wellesley College 
have conceived a fresh approach to understanding women's 
psychological development and women's relationships. They 

93 



assert that human being and psychological development occurs 

a part of a relational matrix. Therefore, it is not in 

"separation" or "independence" from others but rather in 

connection that we become fully ourselves and manifest 

2 
empowerment and, I would suggest, liberation. The 

significance of relationship to women's lives and moral 

decision-making has been trivialized by Freudian scholars and 

termed "stagnated" by modern psychologists. This approach 

3 
has been critiqued by Gilligan, Chodorow, Keller and others. 

Jean Baker Miller and the psychologists at the Stone Center 

assert that it is with and through relationships that women 

grow, change and find their power. I believe that this 

"self-in-relation" approach is also consonant with feminist 

liberation methodology. 

This approach to women's psychological and moral 

development has influenced the design and nature of the 

remaining questions in this study. I have asked questions 

regarding the impact of AIDS on lesbian's relationships with 

the gay community, other communities and individuals. The 

language of relationship, I think, is a tool for unearthing 

deep feelings and expectations. I have been very cautious 

not to apply this approach too freely because the experience 

and relationships of lesbians and women of color have been 

not yet been successfully addressed or analyzed from this 

perspective. In designing questions about the impact of AIDS 

in terms of lesbians' relationships to persons and 

communities, I hoped to gather data about lesbian identity in 

94 



the workplace, to whom these women feel accountable, and how 
they understand AIDS and AIDS work as affecting their lives. 

Coming Out in AIDS Work: Many of the lesbians in this 
study entered AIDS work as a way of working with and for the 
gay community. The increased visibility of gay people in 
general due to AIDS in the United States has not resulted in 
increased societal acceptance. In fact, hate crimes, or gay 
bashing, has actually increased over the last five years. 
Some workplaces discriminate against gays and lesbians 
because of misconceptions about HIV transmission. Even if a 
lesbian is open with her co-workers about her sexuality and 
relationships, she must make daily decisions with clients, 
patients or colleagues in other agencies. While AIDS work 
often provides a positive, supportive environment for gays and 
lesbians, it is not always the case. Being openly lesbian in 
the workplace still carries risks, particularly in mainstream 
settings such as hospitals or government agencies. The 
disappearance of openly homophobic rhetoric from state and 
federal agencies only means it has gone deeper under the 
surface. I wanted to get a sense of the participants' 
opinion on the value and importance of being "out" at work 
and to document their lived experience in that regard. 

All of the lesbians in the study group are open with at 
least 50% of their co-workers. The great majority (80%) of 
the study group feels that in general it is important for 
lesbians to be out at work. The other 20% generally value 
coming out, but qualify their answers in various ways. 

95 



Even those who not agree that all lesbians should be out at 
work have themselves chosen to be open. Nevertheless, the 
respondents offer many Insights into the ways decisions about 
coming out facilitate or hamper one's AIDS work. 

Visibility. Some respondents felt that lesbian 
visbllity was as important in AIDS work as in any other 
field. No particular value was placed on being open in their 
present field. An AIDS program director felt that "we are 
invisible as women and need to let people know why this work 
is important to us personally in order to get support." The 
director of a hospital-based children's AIDS program also 
felt that lesbian visibility is Important saying, "I think it 
is critical that it be known that a large number of service 
providers are lesbian." A substance abuse treatment 
coordinator believes visibility at work is part of a larger 
issue. She writes, "We should not be open just because of 
AIDS but as one more person or as a human being." 

Others felt that AIDS work was both a challenge and an 
opportunity for education and increased lesbian visibility. 
A state AIDS program employee wrote, "It doesn't really 
matter what your job is. In fact, being able to do AIDS work 
has created a space where it is possible to be % out.'" 
While AIDS programs have hired large numbers of gay and 
lesbian employees, they have not often publicly recognized 
their presence or their contributions. In addition, lesbians 
have also felt a lack of support from gay men in some 
settings. A city health department educator asserted: 

96 



We are a vastly under acknowledged 

source of momentum and insight in 

AIDS work. We need to recognize 

ourselves and each other, and we 

need to push for recognition from 

gay males and heterosexual AIDS workers. 

Mutual support. Some respondents viewed coming out as 

Integral to feeling whole and maintaining self-esteem in 

their work. A lesbian activist and physician wrote: 

I think it is imoprtant to be open about 
lesbian sexuality in all forms of work 
for my mental health and spiritual 
wholeness, for that of my co-workers and 
clients. 

While a mental health worker felt that coming out is a matter 

of individual choice, she has chosen to be open at her AIDS 

organization: 

I couldn't do this work if I had to 
waste energy begin closeted. Being 
closeted sends a message to gay clients 
and to society that being gay is not O.K. 

Even for those lesbians who have chosen to be open at work, 

it has not always been rewarding or even pleasant. A state 

health educator wrote: 

[Coming out] has to be a personal 
decision based on the level of 
homophobia at work. At times I have 
not been happy that I'm out. Unaware 
office and other staff have made it 
very hard. At other times I've been 
really thrilled I can be so open at 
work. I can't generalize for 
lesbians as a whole. 

As in every setting, lesbians learn to assess the relative 

personal safety and usefulness of being open. "Being out has 

to be a mutual interaction with an environment, so there can 

be prescription which always applies." 



97 



Combatting homophobia, some participants saw openness 

as a way of battling homophobia at work and in society at 

large. Recognizing the Inherent heterosexism and homophobia 

which taints policy and patient care, some lesbian AIDS 

workers see themselves as educators and activists. A HIV 

prevention program worker wrote: 

Because of the tremendous homophobia 
related to AIDS I think it's important 
for lesbians be open about who we are. 
It's a way of being in solidarity with 
gay men and it also has the potential 
of Increasing awareness of co-workers 
and clients. 

As illustrated earlier, many lesbians entered AIDS work as a 

way of sustaining and working on behalf of the gay community. 

For some, AIDS work brings together commitments to their 

communities and to their personal goals. Most of the 

participants in the study are aware of their role as a 

visible representative of the lesbian community to clients 

(particularly gays and lesbians), health policy makers and 

the wider community. 

Relationship with the gay community : Women whose 

primary emotional and sexual attachments are to other women 

do not universally identify with the "gay community" or even 

with the terms lesbian or gay. There is a wide continuum of 

experience and identity which is influenced by the dynamics 

of race, class and gender oppression and privilege. Some 

women are insulted by the use of the term lesbian to describe 

their experience, others call themselves dykes. Some white 

lesbian separatists avoid unnecessary contact with men, while 

98 



other lesbians or gay women include gay men among their 
closest friends and even sexual partners. 

I wanted to address the particular relationship the 
participants have with what they perceive as gay or lesbian 
communities. Given the epidemiology of HIV/AIDS among gay 
men in the U.S., I expected the study participants to have 
some expedience of their AIDS work in relation to that 
community, but to also name some conflicts within these 
relationships. 

AIDS work has changed the relationships between 
lesbians and gay men. Throughout the struggle for gay and 
lesbian liberation, lesbians have often labored unappreciated 
and unacknowledged by gay men. AIDS has created new problems 
and new opportunities for lesbians and gay men to work in 
solidarity. While most respondents view this new connection 
with gay men positively, this relationship is still evolving. 
This new friendship and the prospects for solidarity with men 
bring rewards, but they also bring fresh frustrations and 
challenges in the fight against sexism and racism in the gay 
community. 

A number of women admitted that gay men had not been a 
significant part of their lives until they began to do AIDS 
work. A Black program director noted that AIDS work had 
broadened her relationships with a larger number of people. 
"I have built more relationships with gay men then I had had 
and I have opened discussions with gay men that I probably 
would never have had under other circumstances." Coming out 

99 



during the AIDS/HIV epidemic influenced the quality of 

another lesbian's friendships with gay men. She wrote: 

I have several close gay male friends 
— sometimes I'm more able to talk 
with them and feel understood than by 
lesbian friends. Have been questioned 
by lesbians about the degree and 
commitment I've made to working on AIDS. 
I have little patience with AIDSphobia 
and sterotyping around HIV Issues in the 
lesbian community. I came out in major 
ways around AIDS work, thus I feel 
different than many lesbians who did 
not or came out via the women's community 
■first.' AIDS work has meant a number 
of losses I might never have had, numbers 
of men I might never have met. 

Another white lesbian expressed the mixed blessings of AIDS 

work and the politics of the gay community: 

I am more disgusted, on one hand, with 
sexism and racism in the gay community. 
On the other hand, I feel more solidarity 
with the gay male community beause AIDS 
is showing us how expendable gays are 
to this society. I feel isolated from 
the lesbian community — very few of 
us work on AIDS [in my city]. 

Similar frustrations were voiced by lesbians of color 

It has enabled me to work with the Latino/ 
gay/bi/men who are having sex with men and 
lesbians. The outrach done for the Latino 
groups has fed [my organization's work] and 
vice versa. As far as the mainstream gay/ 
lesbian community, I've been known through 
my work in AIDS and Latino gay issues — 
it has put me in a difficult spot for 
being THE Latina lesbian spokesperson. 

*** 



Much more interest in and appreciation of 
gay male culture and sexuality. Much 
deeper sense of the emotional limitations 
of boys. I am disturbed by the way AIDS 
has been allowed to subsume the battle 
for our civil rights. 



100 



The development of AIDS organizations and the new 
opportunities for gay men and lesbians to openly work side by 
side in the midst of this epidemic have not eradicated long- 
standing tensions arising from racism, sexism and classlsm. 
Lesbians, frustrated with the self-absorbed whining of some 
gay male activists have challenged groups such as ACT-UP to 
address the minor status they give to concerns of women and 
people of color. Many of the gay men in AIDS services and 
activism do not have a liberation or even a liberal outlook. 
Therefore, they fail to make some of the necessary political 
connections between AIDS and other historical social problems 
such as poverty, sexual violence and institutionalized 
racism. 

A Chicana lesbian who directs a lesbian and gay 

organization aired her frustrations: 

I'm totally disgusted by the alarmists 
who may not have been involved in any 
movement for social change prior to 
AIDS. They're self-righteous and 
ethnocentric; racist and condescending. 
But I knew that before AIDS anyway. 

Lesbians in AIDS organizations, particularly women of color, 

are making connections between movements for liberation, 

reproductive choice and AIDS/HIV care and prevention. A 

health care worker also sees changes in health related 

attitudes emerging: 

This epidemic has brought gay men and 
lesbians together in struggle. At 
St. Marks (a gay and lesbian community 
clinic), gay men were tremendously 
hostile to non-traditional and spiritual 
aspcets of healing that lesbians 

101 



Incorporated Into our care. AIDS has 
caused gay men to re-evaluate those 
traditional patriarchal notions of 
nurturance, reliance on the exclusively 
rational, develop openness to healing 
circles, spiritual elements of healing, 
crystals, energy transformations and 
the like. 

While the alliances and working relationships with gay 
men have been characterized as mostly positive developments, 
they also demand additional emotional and political work on 
the job that compounds the efforts to do AIDS care, education 
and services. 

Impact on relations with other communities : The 
societal response to AIDS, particularly on the community 
level, has engendered collaborations and coalitions among 
groups and communities that had been indifferent or openly 
hostile to one another. The peculiar relationship between 
the federal government and the gay community AIDS organizers 
is mirrored in other alliances between white AIDS 
organizations and Black churches, Latino health centers, 
Haitian cultural associations, and recovering addicts. Who 
could have predicted that the U.S. government would finance 
grassroots gay organizations, or that middle class gay men 
would suddenly find themselves homeless and seeking shelter 
with intravenous street drug users, or that a Black church 
would invite a Black lesbian to talk about AIDS? I expected 
that through their work, lesbians might identify new insights 
into their relationships to groups outside their familiar 
circles. 



102 



The most profound effects of AIDS work articulated by 

study group members have to do with racism and classism. 

White lesbians in AIDS work have been challenged with the 

devastating incontrovertable evidence of white oppression in 

the lives of people of color. As witnesses to the 

discrimination, poverty and dramatic differences between the 

care and choices available their African American, Latino and 

Haitian clients compared to gay men, white women in this 

study have been deeply shaken. For many, it is as if scales 

have fallen from their eyes. AIDS work takes on a revelatory 

quality in this regard: 

[AIDS work] has made me more connected 
and comfortable with women of color — 
has helped me see more clearly the 
discrimination toward minorities in 
housing, jobs, health care and political 
organizations who profess to be unbiased 
— have learned about subtler, more 
institutionalized racism. 

*** 

While I had always had a certain degree 
of sensitivity about the meaning of 
poverty, racism and oppression — I now 
understand these "concepts" on a deeper 
more personal level. This experience has 
showed the "world" of . . . America to 
me in deeper ways. I feel less afraid 
of people, less guilty about who I am. 
I have become much more cynical about 
human beings at the same time that I have 
begun to feel caring and softness toward 
people I was taught and expected to hate. 

*** 

My work with prisoners with AIDS and HIV 
has made me realize how little undertanding 
and support there is for prisoners in the 
lesbian and gay community and also among 
AIDS activists. [It] has sensitized me 



103 



and made me aware o£ discrimination 
faced by I.V. drug users and people of 
color communities in relation to the 
AIDS epidemic. 

For white lesbians in this study, AIDS work has 
presented opportunities to take positive, yet harrowing, 
steps toward confronting the reality of their privileged 
social location. While the nature of their own oppression in 
heterosexist patriarchy becomes clearer in relation to white 
gay men, the nature of their privilege is likewise clarified 
in relation to people of color through AIDS work. As one 
lesbian expressed, "It's brought me Into contact with more o£ 
the world." 

Lesbians of color in this study group discussed the 

ways their views have expanded with respect to Involvement 

with the gay male community and confronting homophobia in 

communities of color. A federal program coordinator of 

African and Hispanic heritage felt that AIDS brought her into 

the gay community. 

As a lesbian of color, I never had been 
exposed to the "gay" community prior to 
AIDS work. It has broadened my horizons. 
There is an AIDS community that I have 
become a part of. 

These new "horizons" also come with a price for lesbians of 

color who may again find themselves acting as a * bridge' 

between the gay community and other communities. A Latlna 

wrote that she tired of being the Latina lesbian spokesperson 

in both communities. In the gay community, Latinos are 

ignored, "in the Latino community [there is] the same 



104 



conflict — they don't want to acknowledge the homosexuality 

Issue . " 

Lesbians of color, however, find that AIDS work can 

sometimes provide a mechanism for being out in their 

communities and for combatting homophobia. An African 

American educator with a small agency felt that 

I've had more involvement with the 
Black community as a result of doing 
AIDS work. In fact, AIDS work has 
enabled me to come out as a lesbian 
in the Black community. [I've also 
had] more contact with people from 
different classes and worlds, e.g. 
I.V. drug use and treatment, whom I 
never would have met. 

A Latina working in substance abuse treatment found that 

AIDS work has had a positive impact on her relationship with 

the Latino community. 

Because when I talk about AIDS in 
my community, for example, we discuss 
a lot of issues starting from taboos 
to relationships (healthy), etc. We 
touch a lot of issues because AIDS 
is not the only issue important for 
my community. There are a lot more 
issues and all of them relate to AIDS 
indirectly. 

For the women in this study, AIDS work has had a 
significant effect on their relationships to the gay 
community, to other communities and to their own self- 
perceptions. Confronted with enormous daily challenges in 
the AIDS resarch, prevention and patient care, they have 
learned about communities and cultures they had never before 
encountered in such depth and developed an appreciation of 
coalition-building and cross-cultural understandings. These 
encounters have not always been easy nor enjoyable. As they 



105 



confront their own and one another's limitations and blind- 
spots — and work against AIDS — situations can feel 
threatening and filled with tension. Overall, however, the 
lesbians in this study view these challenges as significantly 
affecting their relationship to the world. 

Impact on personal relationships : Some lesbians have 
experienced Incredible personal growth in their personal 
relationships in the midst of their work with and on behalf 
of people with HIV. This has sometimes meant the loss of old 
friends, lovers and family, but has also meant new friends, 
different patterns of relationship or clarity in personal 
goals. I hoped to glean the extent to which lesbians 
attribute relational changes to working in AIDS. 

Only 10% of the respondents felt that AIDS work was 
primarily a stressor in their personal relationships. The 
great majority of the study group viewed AIDS work as having 
caused positive personal relationship changes. Only two 
people saw AIDS work as having no impact. 

Long hours and demanding work changes the focus of 
personal relationships, sometimes to the breaking point. 
Loneliness and isolation can potentially result from this 
kind of stress. For one lesbian In the group, "it's been 
extremely stressful, and caused major changes in the time I 
spend with friends, lovers and in priorities for my life." 

Several lesbians saw these changes and the dissolution 
of some relationships as an improvement in the quality of 
their relationships: 

106 



With HIV-infected friends, the bullshit 
Is eliminated. Intimacy has developed 
quickly and bonds are deep. I've learned 
a lot about the human spirit, about 
community, interdependence and love in 
the pure sense. Many of my other personal 
relationships feel shallow and unsatisfying 
in comparison; consequently, I've ended 
these friendships. My sense of what love, 
commitment and friendship are about is 
permanently changed. 

*** 

I've developed some of my closest 
friendships through work connections. These 
are friends who I know I will be close to 
even when I leave this work. I think the 
work draws an incredible group of people 
to it — people with compassion, commitment, 
vision and good politics, sensitivity, 
spirit, etc. 

AIDS work can also change how friends and colleagues 

behave. Party conversations can be interrupted by Impromptu 

counseling sessions or educational presentations. Or friends 

might wave away the sadness or frustration an AIDS worker 

expresses. Several respondents spoke of these relational 



changes. 



My friends who do other kinds of work are 
often shocked at how easily and readily 
I talk about sexual practices. Some are 
upset, but most are intrigued and begin 
asking me concrete questions. 



*** 



Well, I never used to talk about my work 
outside of work — well, not too much — 
but now I find myself talking a lot more. 



*** 



I think I have been "marked" in the 
community as someone doing work with 
prisoners. There are so few of us. 



107 



There Is a sense of being "marked" or set apart when 

one is involved in AIDS work. Families and friends attach 

meaning to AIDS work, finding it "important," "depressing," 

"Interesting," or "stressful." For some lesbians, this work 

can effect change and attract external approval or 

recognition from authorities or leaders formally, as in 

awards, or Informally as in the following exerpt: 

I would say that it has probably had 
an effect on all my relationships. It 
has strengthened my ties with other 
"activists" in the community. I think 
it has matured my family's view of me. 
And I think just about everywhere I go, 
I talk to people about my work and it 
begins to have a direct impact on them 
emotionally and politically. 

Working with and on behalf of people who are battling a 

life-threatening illness along with the societal obstacles 

attached to HIV has a profound affect on how lesbians view 

their lives. Several respondents mentioned that they 

appreciate the need to "live every moment to the fullest" and 

an awareness "about the idea that everyday is a gift and how 

important it is to live it fully." A participant who works 

as a psychotherapist wrote: 

Being such an intimate part of someone's 
dying or coming to terms with death has 
had a major impact on me emotionally. I 
have shared this experience with certain 
friends and family members and I think in 
some ways it has made me feel closer to 
them and allowed them to be closer to me 
just by sharing these feelings. 

AIDS work has significantly affected the character and 

shape of these lesbians' personal relationships. In spite of 



108 



the stressful and changing economic and social conditions 
coupled with constant loss, the changes effected by AIDS 
work are viewed as an important and, for the most part, 
growth enhancing. The respondents have managed to view the 
emotional, physical and intellectual challenges encountered 
on the job as opportunities for transformation and growth. 

I want to avoid painting an overly-rosy picture of the 
impact of AIDS work on lesbians. Some lesbians have broken 
up with lovers, developed stress-related illnesses, felt 
depressed and lonely. Coping skills can vary from day to 
day; perhaps those who completed the surveys were having a 
"good" day. Nevertheless, these women have all experienced 
profound affects of AIDS work both personally and 
professionally. 



109 



Impact on spirituality: I believe that to do AIDS 
work, one must draw on spiritual resources to sustain hope, 
compassion and commitment in the midst of discouragement and 
loss. If you are a nurse, your patients never get well 
again. If you are an educator, you find that information, 
more often than not, falls on deaf ears. If you are a 
researcher, you discover that miracles are fleeting. And if 
you are an administrator, you are forced to fight with 
colleagues for funding. Spiritual resources may flow out of 
interpersonal or community relationships, rituals, physical 
activity, meditation, prayer or religious beliefs. Given the 
alienation of many lesbians from formal religion, I sought to 
learn how they describe the Impact of AIDS work on their own 
spirituality or vice versa. The results have been very 
moving and for the most part, speak for themselves. I feel 
that most analysis I can offer would be redundant. The 
chapter on theological reflection will address the issues 
raised here more systematically. 

Only three participants described the impact of AIDS 
work on their spirituality in negative terms. For them, AIDS 
work had reconfirmed their anger and alienation from 
organized, patriarchal religion. One former Catholic wrote 
that it has "strengthened my anti-Catholic beliefs because 
of the gay and lesbian stance." Another said, it "reinforces 
my anger at most organized religion under patriarchy." A 
third articulated her rejection of formal religion and "those 
who call themselves religious but turn their backs on the 

110 



needy." She then elaborated: 

Also AIDS has absorbed me to a degree 
of burnout that alienates me from my 
center of energy. I'm working on 
that — and planning on leaving AIDS 
work in a short while to study massage 
therapy and spend time with ME. 

The lesbians in this study discuss their confrontations 

with personal and community energy depletion and the 

connections they are discovering between the body and spirit. 

These women also show how they are redefining spirituality 

outside of the patriarchal models. Eight respondents 

describe embarking on a new spiritual path because of AIDS. 

Some common themes will become evident in the exerpts that 

follow: 

I guess I never considered myself a 
spiritual person, but seeing so many 
people around my age or younger die 

— it brings up a lot of questions and 
adds stress to my life. I feel a need 
to try to seek a quiet, supportive 
space somewhere. I always equated 
spirituality with institutional 
religion, but now I am beginning to 
see them as separate. Many of my 
patients get help from religion — 
whether it is help getting off drugs 
or just help from priests, chaplains, 
ministers. So I view religion in 

a different light. 

*** 

I've benefited from twelve-step programs 

— seeing this degree of death and 
illness forces one to examine one's 

life and values in wholly different ways. 

*** 

I am more tempted by the notion of heaven 
and afterlife now that loved ones have 
died. My emotions clash with my beliefs 



111 



on that one. I am more understanding 
about what motivates "blind" religious 
faith. I understand why whole religions 
base themselves on notions of suffering 
and release from suffering. I experience 
a greater need for spiritual "moments" 
now than "before." 

A few respondents stated that AIDS work had not 

affected their spirituality but has caused them to examine 

life and death. 

It has gotten me to clarify my own 
relationship to life and death and 
strengthened my belief that death is 
another important dimension of life. 
That is, death is another reality — 
consciousness — it makes death less 
frightening, though it doesn't ease 
the pain of knowing that people suffer 
as they die. 

*** 

It's been humbling and helped me know 

my place in the universe. I've been 

learning about valuing life and seeing 

it as part of a spectrum, which includes 

leaving it. 

*** 

Sometimes — I feel like since I've been 
doing this work that I have a need to 
believe in some more powerful force so 
as to make sense of the anger, pain and 
sadness . 

A few participants describe specific spiritual 

beliefs or practices which they have found comforting or 

empowering: 

AIDS has certainly affected my sense of 
my own mortality. Siddha Yoga has helped 
me keep a perspective about everyone 
being on our own paths, and keeping the 
focus on what I need to learn from each 
experience. My belief in reincarnation 
has become increasingly comforting. 

*** 



112 



I would say that my spirituality was 
somehow directly the cause of my getting 
involved with AIDS work. Working with 
the personal loss of a friend and dealing 
with death one-on-one, I needed to carry 
that experience into a wider arena. Every 
day my spirituality is touched/challenged 
and affected by what I see and how I try 
to make sense of it. 

*** 

It's hard to explain. I feel that the 
general trend of my life has been to 
explore and deepen my spirituality as 
years have gone on. AIDS work has been 
a part of this. For one thing, dealing 
with life-threatening disease, death and 
dying constantly puts you in situations 
where you need to call on God, the 
Goddess, spiritual help and helpers. 

*** 

I feel very close to my people and I love 
them. My spirituality keeps growing on 
a daily basis because I believe in what 
I cannot see (vision). 

Several participants report that AIDS has not 

significantly affected their own spiritual experience, but 

has enhanced their tolerance of others' beliefs. A lesbian 

in a psychotherapy private practice writes: 

I have had the honor of knowing some 
amazing peple living with AIDS and 
their incredible belief and positive 
energy have been inspirational — 
pushing me to review my own personal 
beliefs. 

Some "new age" spiritualities have been criticized for 

being highly Individualistic and escapist. Encouragements to 

"follow your bliss" and "look within," have been interpreted 

as excuses to opt out of struggle for justice. And for many 

people, that is the case. The search for inner peace and 



113 



serenity results in a privatized ethic divorced from 

relationship to other beings. But some of the participants 

who have utilized elements of this movement have continued to 

be drawn back out into the world and into AIDS work. 

The need for centering and self-love 
(and my capacity to do so) has grown 
immensely. Spiritual renewal and 
trusting my own "inner knowing" has 
become pivotal. Doing AIDS work 
pushes me to find my serenity which I 
can, in turn, bring back to my work. 

No singular practice or belief sustains the majority of 

the lesbians in this study. They draw on their religious 

traditions, ancient eastern meditation, personal reflection 

and community involvement for nourishment and renewal. What 

stands out for me as I review the data, is the extent to 

which these women attend to their relationships with people 

living with HIV. In some cases, the illness or death of a 

single friend moved them to work in AIDS. In other cases, 

many losses or the love for their community furnishes the 

reservoir of strength from which they draw daily and into 

which they pour out their love and energy, sustaining their 

communities and one another. They watch, listen and learn 

from their clients and friends with AIDS and incorporate the 

gifts from those relationships into spiritual resources. 



114 



CHAPTER FIVE: AIDS Work and Liberation 

I haven't personally been able to 
figure out why so many many lesbians 
are doing this work; possibly we have 
more energy because we're less at 
risk. Or because we're so "committed 
to political causes." My involvement 
doesn't really make sense to me, 
except that I followed my heart 
knowing that someday, perhaps, I 
will understand more. 

The lesbians in this study group clearly have chosen 
to do AIDS work. They are highly educated, skilled 
professionals who would likely excell in a variety of 
positions. And most envision themselves continuing in this 
work in the near future. In this chapter, I will discuss the 
nature of AIDS work using the study responses and feminist 
liberation theological analysis in an attempt to uncover what 
makes AIDS work so compelling. 

When asked about what influences them to leave or 

continue in the work, only three respondents focused on 

negative influences. Two of the respondents explained that 

the political battles wear against the personal burnout and 

losses. The director of a small AIDS agency, a white 

lesbian, wrote: 

I'm really tired of the egos and the 
turf stuff and really dislike myself 
as I see myself acting in the same 
way. I'm not sure I will be able to 
continue this work after my best 
friend dies. 

A great deal of the stress that administrators 

encounter has its roots in the politics of community 

organizing and the tensions among Individuals and between 



115 



different community agendas. The tensions within the fragile 

coalitions between white gay men and communities of color are 

fueled by the enormity of the tasks before them. One woman 

lamented at "the lack of support from gay white racist males, 

who feel threatened by women in general and more so with an 

outspoken Latina." 

The increasing magnitude of the case load for care 

providers adds work and personal stress as additional staff 

are not hired to manage the new patients. A white nurse in 

an AIDS clinic likes her job, but might leave it because the 

clinic is understaffed. 

The stress of working understaffed 
may be too much. Because of hospital 
layoffs, we see 70 patients more than 
a year ago and have one less nurse. 

A Latina program director feels dedicated to the Issues 
but "the battle is uphill In this country, I'm burnt out over 
and over. I feel like I am beating my head against the 
wall." From these responses, it seems that as long as hope 
and a sense of progress can be sustained, these women might 
be willing to continue in the work. 

Based on the responses of the participants in this 
study and on my own experience, I would like to venture a 
hypothesis about the meaning of AIDS work for some lesbians. 
I believe that working in the AIDS/HIV epidemic is an 
instrumental part of the articulation and integration of 
lesbians' self-identity. It offers meaningful, purposeful 
important work with one's community of accountablity. For 



116 



white women and women of color that can mean political, 

social, sexual or ethnic communities. It also presents 

options for sexual disclosure that do not often exist in 

other work settings. All the lesbians in the study were out 

to at least 50% of their co-workers and some of their clients 

or patients. Thirty-eight percent of these women work in 

state, federal or city agencies or institutions. And all of 

them are out at work. I see three dynamics at work in 

lesbians' decisions to continue in AIDS work which I will 

outline here. 

Relationship. As the Stone Center and others have 

asserted, women come into their own power through growth- 

1 
enhancing relationships. Jean Baker Miller envisions a 

growth-enhancing relationship to be one in which each person 
1) feels a sense of zest, 2) is more able to act and does 
act, 3) has a more accurate picture of one's self and the 
other person, 4) feels a greater sense of growth, 5) feels 
more connected to the other person and feels drawn out and 
motivated for connection to others. Relationship is a 
dynamic, not an entity. Janet Surrey describes relationship 
in active terms as fluid, momentum, interaction and 
transcendence. This notion of relationship incorporates an 
expectation of mutuality and results in greater psychological 
resources for everyone in the relationship. 

The relationships lesbians describe with their co- 
workers and particularly with people living with HIV- 
infection generate these qualities. Some of the lesbians in 

117 



this study view their most significant motivation for doing 

AIDS work in terms of their relationships with a person or 

community. 

My HIV-infected friends keep me going. 
If they had the information, maybe they 
wouldn't be infected. Although I can't 
change what happened to them, maybe I 
can influence someone's behavior before 
they get Infected. 

*** 

Being close to people who face the 
disease bravely or not, with whatever 
resources they can rally -- I am always 
mightily impressed with our own strength 
and goodness. Friends often ask, "how 
can you do It?" and I'm often embarassed 
to say how much I like it, how positive 
my experiences of working with PWAs are. 
I don't worry much about death and loss 
these days, as it just keeps happening 
and I'm kind of used to its sadness. 

*** 

Because many of my friends continue to 
get sick, die or go through emotional 
traumas because of their Illness. I 
find myself held to this work out of 
loyalty and caring for them. 

These women most often talk about how much they have 

grown and have learned from their friends and clients living 

with HIV. Meanwhile, they work 30 - 80 hours per week 

providing care, education or other services with and for 

people with AIDS. Mutuality is an important part of these 

relationships — even in the briefest encounters. AIDS/HIV 

sets up an intense relational dynamic because no one has 

enough time — not the PWA, or the educator fighting a tidal 

wave of infection, or the nurse who has a bursting patient 

load. Friendships "cut through the bullshit," as one study 



118 



member was quoted earlier. 

Finding our power. Several of the participants 

remarked that AIDS work allows them to develop and use their 

expertise and experience to do something meaningful. The 

coordinator of a program for children with AIDS described her 

experience: 

I choose to continue because I feel I 
am a strong, clear voice for kids who 
can't always speak for themselves. I 
also choose to continue because I bring 
a lot from my past work with people 
with disabilities. Also, as a lesbian 
at this time it is critical to do this 
work . 

For her, there is something significant about being a lesbian 

at this moment in history. A physician wrote, "I feel the 

hand of history on my shoulder." In AIDS work lesbians meet 

daily challenges that stretch them beyond where they might 

have ventured before. As long as the challenges can be met 

successfully or one can accept limitations, the work remains 

satisfying. 

Action for Justice. A common theme echoed by many of 

the participants in discussing their reasons for doing AIDS 

work is the desire be with, protect or advocate for those who 

are marginalized — prisoners, gays and lesbians, Latinos, 

African Americans, PWAs, children. The personal experience 

of loss and the excitement of a professional challenge 

converge with the commitment to social justice. 

The people who are doing AIDS work and my 
own sense of immediacy and "justice." I 
look around me at the incredible people 
doing Incredible work despite all odds 



119 



— lack of money, resources, sites, etc. 
and believe that there must be some way 
to make wonderful ideas into concrete 
realities . 

*** 

In deciding to leave [a recent volunteer 
position] — most influential was their 
lack of a guiding political/philosophical 
framework that I could believe in, their 
racism, sexism and homophobia and the 
reluctance (as a result) to take 
unpopular stands on key issues. 

The AIDS/HIV epidemic represents a crossroads of 

oppressions and privilege -- the Interstices of race, class, 

and gender oppression. AIDS work, therefore, can be part of 

a political strategy to eradicate homophobia, racism and 

sexism. It is also rife with internal conflicts and 

contradictions due to organizational funding sources. When 

your organization receives thousands of necessary dollars 

from the federal government, your accountability shifts away 

from the community to the patriarchy to some degree. Only 

a small degree of social change can be accomplished from 

within an organization whose mission is to provide services 

and care to individuals, unless the agency shifts its focus. 

Theological Reflections 

It has been a very moving experience for me to hold and 
to live with the thoughts and feelings poured out in these 
questionnaires. I have felt the presence of these women, 
some of them friends and colleagues, others I have never met, 
throughout this enterprise. Their participation has been a 
great gift and has magnified the connections I feel with my 



120 



AIDS co-workers. One remark, added at the end of the 
survey, in the section reserved for comments, has remained 
in my mind since I first read it months ago. A white nurse 
with a history of gay and feminist activism wrote: 

I think the importance of community 
support, of what we do for each other, 
far outweighs the spiritual. 

Her words have remained with me because they raise 

numerous issues about theology and ethics and the 

relationship between politics and spirituality in the AIDS 

epidemic. In the praxis of our life and experience we can 

notice gaps between our ideology and our practice. Our 

values and our actions often do not cohere. Our love seeks 

after justice, yearns for right relation, but we often bump 

up against our human limitations, our boundaries, and our 

efforts are thwarted for the moment. 

Our physical and emotional boundaries are also points 

2 
of connection and, therefore, liberation as well. 

Through the heterosexist dynamics of dominance and submission 

we learn to alienate our bodies and spirits. One must have 

dominance over the other. Over the course of history, women 

have been associated with earthly, bodily, sexual, emotional 

qualities. These qualities are de-valued in the heterosexist 

Ideology which esteems the intellect and the spirit against 

the body, and in which men's dominance over women is 

considered the law of nature. These dualisms of mind and 

body, spirit and flesh, sexuality and sanctity alienate us 



121 



from our Selves and from one another. Feminist liberation 
theology seeks to heal the fissures and reclaim and re-image 
those boundaries as connections rather than separations. 

AIDS work Intersects and challenges our notions of the 
patriarchal characterizations of life and death, pleasure and 
pain, homosexuality and heterosexuallty, male and female, 
spirituality and politics as dichotomous. This 
conceptualization of spirituality and political action as 
separate and disconnected from each other arose in small ways 
throughout the study. It may have roots in the alienation 
most of these lesbians feel from organized patriarchal 
religion. However, in some ways, this view perpetuates the 
false dichotomy instead of repairing the unity. 

In her essay, "Uses of the Erotic: The Erotic as 

Power," Audre Lorde states forthrightly that 

The dichotomy between the spiritual and 
the political is also false, resulting 
from an incomplete attention to our 
erotic knowledge. For the bridge which 
connects them is formed by the erotic 
-- the sensual -- those physical, 
emotional, and psychic expressions of 
what is deepest and strongest and 
richest within each of us, being 
shared: the passions of love, in 
its deepest meanings. (3) 

In reality, those participants who articulated an 

aversion to spirituality or denied that AIDS work has had any 

impact on their spr ir ituality also spoke powerfully of their 

love, respect and admiration for their friends and clients. 

They articulated their commitment to the fight for human 

rights and dignity through AIDS work. In and through the 



122 



relationships they maintain with friends, lovers, colleagues 
end communities, these lesbians are discovering their own 
power to act for justice in a new setting. 

AIDS work is about healing — becoming whole and sound 
— not curing. One simultaneouly confronts and transcends 
limits of traditional theologies of life and death, health and 
illness, alienation and reconciliation. For lesbians, AIDS 
work re-engages their political, spiritual, ethnic, racial 
and sexual self-identities. It unites them in relationship 
to communities in crisis and also on a journey of healing. 
As one participant put it, "it's hard to imagine any more 
important work to do." AIDS work includes the inherent drama 
of life and death issues, but effects a profound liberation 
for those engaged in it. There is utter pleasure in bringing 
all those disperate alienated parts of one's being together 
in work for justice. 

The lesbians in this study wrote of the changes that 

AIDS work has caused them to review their priorities and 

values. I believe that AIDS work, in making it possible to 

bring the whole of oneself to her work, releases the power of 

the erotic in a fuller way. Audre Lorde continues, 

Our erotic knowledge empowers us, 
becomes a lens through which we 
scrutinize all aspects of our 
existence, forcing us to evaluate 
those aspects honestly in terms 
of their relative meaning within 
our lives. (4) 

Traditional heterosexist theologies underglrd race, 

class, and sex oppressions and therefore, are not equipped to 

123 



effect the healing of AIDS or of the alienation women 
experience in this society. However, lesbians in AIDS work 
have discovered and created spiritual and theological 
resources within their relationships — to religious 
traditions, co-workers, friends, lovers, and most 
significantly, to people living with HIV. These 
relationships provide the "zest" and the spiritual/physical 
nourishment which empowers them in the work of justice. 
While AIDS work poses Inherent conflicts and holds 
immeasurable loss and grief for lesbians and others who chose 
this path, it also holds gifts in the margins — and those 
make all the difference. 



124 



ENDNOTES 
Chapter One 

1. The mainstream media has persisted in using the term 
"AIDS virus" or "infection with AIDS" in reference to 
any stage of infection with HIV. There is a clinical 
and existential distinction between HIV Infection and 

a diagnosis of AIDS. A person many be Infected with HIV 
for many years before manifesting overt symptoms of 
immune dysfunction. The term AIDS refers to specific 
conditions meeting U.S. Centers for Disease Control 
criteria. HIV/AIDS or AIDS will be used in this paper 
to refer to the pandemic and the full range of issues. I 
will use HIV when referring specifically to the 
infection in a person. 

2. John D'Emilio and Estelle Freedman, Intimate Matters, A 
History of Sexuality in America, (New York: Harper and 
Row, 1988), 289. 

3. John D'Emilio, Sexual Politics, Sexual Communities: The 
Making of a Homosexual Minority in the United States, 1940 
-1970, (Chicago: University of Chicago, 1983), 23-31. 

4. Ibid., 36. 

5. Ibid., 58. 

6. Ibid., 36 - 37. 

7. Audre Lorde, Zami, A New Spelling of My Name, a 
Biomythography, (New York: Crossing Press, 1982), 187. 

8. D'Emilio, Sexual Politics, 67. 

9. Ibid, 58. 

10. Ibid, 68. 

11. Ibid, 93. 

12. Judy Grahn, Another Mother Tongue: Gay Words, Gay 
Worlds, (Boston, Beacon, 1984), 31 - 32. 

13. D'Emilio, Sexual Politics, 105. 

14. Barbara Smith, ed., Home Girls, A Black Feminist 
Anthology. (New York: Kitchen Table Press, 1983), xxx. 
The editor of Black Lesbians, (Tallahassee: Naiad Press, 
1981), J.R. Roberts, cites the letter as having appeared 
in August, 1957. Roberts writes, "This response from 
the left revolutionary artist is consistent with her 
commitment to the "total liberation of the human 



125 



personality." But her anonymity Is Indicative of the 
intense taboo surrounding lesbianism. (There is some 
controversy surrounding those letters -- some say the 
letters were not from Hansberry; others say they were. 
There were also rumors among the lesbian researchers 
that there are more such letters from Hansberry to 
The Ladder and its publisher Daughters of Bilitis. 
The letters were unpublished and their whereabouts are 
unknown. )" 

15. Barbara Grier, [Gene Damon, pseud.], "The Least of 
These: The Minority Whose Screams Have Not Yet Been 
Heard," in Robin Morgan, ed . , Sisterhood is Powerful, 
(New York: Random House, 1970), 333-343. 

>litics, 183. 



16. 


D'Emilio, Sexual 


17. 


Ibid., 184. 


18. 


Ibid., 225. 


19. 


Ibid., 225. 


20. 


Ibid., 228. 


21. 


Ibid., 229. 


22. 


Ibid., 229. 


23. 


Carter Heyward, 
All," Journal of 



"Heterosexist Theology: Being Above it 
Feminist Studies in Religion, 1(1986): 
29-38. A revised version of this essay also appears as 
a chapter titled, "A Sacred Contempt: Heterosexist 
Theology," in her book, Touching Our Strength: The 
Erotic as Power and the Love of God, (San Francisco: 
Harper and Row, 1989). 

24. The Dogmatic Constitution on the Church, 1963, 361. 

25. The Declaration on Certain Questions Concerning Sexual 
Ethics, 1975., n.8. 

26. Ibid., n. 8. 

27. Conversation with Trisha Burke, chair of the women's 
caucus of Dignity, Boston. March 8, 1990. 

28. D'Emilio, Sexual Politics, 214. 

29. Ibid., 214. 

30. Jacqueline Grant, "Black Women in the Church," in Gloria 
T. Hull, Patricia Bell Scott and Barbara Smith, But Some 
of. Us Are Brave, (Old Westbury, NY: The Feminist 
Press, 1982), 146. 



126 



31. Ibid, 147. 

32. Peter J. Paris, The Social Teaching of the Black 
Churches, (Philadelphia: Fortress, 1985), 75. 

33. Smith, Op. Cit., xxii. 

34. Lorde, Op. Cit., 177. 

35. D'Emllio, Sexual Politics, 173. 

36. Ibid., 231. 

37. Ibid., 232. 

38. Dennis Altman, "Legitimation Through Disaster: AIDS and 
and the Gay Movement," in Elizabeth Fee and Daniel M. 
Fox, eds., AIDS: The Burdens of History, (Berkeley: 
University of California, 1988), 302. 

39. Cindy Patton, Sex and Germs: The Politics of AIDS, 
(Boston: South End, 1985), 15. 

40. Ibid., 15. 

Chapter Two. 

1. Cindy Patton, Sex and Germs , 23. 

2. There has been considerable debate among physicians and 
AIDS activists about the characterization of gay men 
who developed AIDS as "previously healthy." Some, like 
gay activist and PWA, Michael Callen, argue that many 
men had been suffering from numerous treatable sexually 
transmitted diseases such as giardia, amebiasis, 
syphilis, gonorrhea, hepatitis B, warts and anal 
fissures. No conclusive evidence has been presented 
linking any of these or other diseases with the 
development of AIDS, although several scientists have 
suggested that syphilis may be a co-factor. 

3. Patton, Op. Cit., 16. 

4. Cindy Patton, "The AIDS Industry," Zeta, (1988), 81. 

5. Eric Rofes, "Gay Groups vs. AIDS Groups: Averting 
Civil War in the 1990s," Out/Look , (1990)2.4: 9 

6. Nancy Stoller, "Good Results or Bitter Fruit? 
Feminists in AIDS Organizations." Paper presented at 
symposium, Feminism and AIDS, Haverford College, 
Haverford, Pennsylvania, March 24, 1990. See also 
Jackie Winnow, "Lesbians Working on AIDS: Assessing 



127 



the Impact on Health Care for Women," Out/Look , Summer 
(1989)10-18 and Steven Epstein, "Nature vs. Nurture and 
the Politics of AIDS Organizing," Out/Look, Fall (1988) 
46-53. 

7. Patton, The AIDS Industry, " 81. 

8. Ibid., 82. 

9. Donna Kate Rushin, "The Bridge Poem," in Cherrie Moraga 
and Gloria Anzaldua, eds . , This Bridge Called My Back ; 
Writings by Radical Women of Color. (Watertown, MA: 
Persephone, 1981), xxi. 

10. At the 1988 National Lesbian and Gay Health Foundation 
Confrence in San Francisco, a plenary session was held 
on lessons from the women's health movement for AIDS 
organizations. The previously crowded ballroom emptied 
as the most of the men in attendance left to socialize 
with each other. Several participants in the panel 
drew attention to the significance of this exodus, 
remarking that men in AIDS organizations believe they 
have nothing to learn from women. 

11. Ronald Rowell in an editorial in the National Minority 
AIDS Council (NMAC) newletter, October, 1989. 

12. Rofes, Op. Cit., 13. 



Chapter Three 

1. Sandra Harding, ed., Feminism and Methodology, 
(Bloomington: Indiana University, 1987), 2. 

2. Ibid., 9. 

3. Ibid., 182. 

4. Ibid., 185. 

5. Beverly Harrison, Our Right to Choose: Toward a New 
Ethic of Abortion. (Boston: Beacon, 1983), 115. 

6. Ibid., 94. 

7. Ibid., 93. 

8. Star hawk, Truth or Dare: Encounters with Power, 
Authority and Mystery. (San Francisco: Harper and 
Row, 1987), 8 - 10. 



128 






Chapter Four 

1. Judith Bradford and Caitlin Ryan presented the 
National Lesbian Health Care Study at the 

National Lesbian and Gay Health Foundation Conference 
in Boston, July, 1988. It is a national survey of 
the health care needs of 1,917 lesbians. Susan Jo 
Roberts, et. al. at the Fenway Community Health 
Center is also conducting a study which has not yet 
been published. Roberts' study asks questions 
related to risk of HIV. Bradford's study does not. 

2. See Jean Baker Miller, A New Psychology of Women, 
(Boston: Beacon, 1976) and Janet Surrey, "Self-ln- 
Relation: A Theory of Women's Self Development," 
Works in Progress No. 13. , Wellesley, Stone Center 
Working Paper Series, 1988. Other works in progress 
are available through the Stone Center at Wellesley 
College . 

3. Cf . Nancy Chodorow, The Reproduction of Mothering; 
Psychoanalysis and the Sociology of Gender, (Berkeley: 
University of California, 1978); Dorothy Dinnerstein, 
The Mermaid and the Minotaur : Sexual Arrangements 
and Human Malaise, (New York: Harper Colophon, 1977), 
Carol Gilligan, In. a Different Voice: Psychological 
Theory and Women's Moral Development, (Cambridge: 
Harvard University Press, 1982) and Catherine Keller, 
From a Broken Web: Separation, Sexism and Self, 
(Boston: Beacon Press, 1986). 

Chapter Five 

1. Jean Baker Miller, "What do We Mean By Relationship?" 
Works Progress, No. 22, (Wellesley, MA: Stone Center 
Working Paper Series, 1986). 

2. I am indebted to Carter Heyward, Janet Surrey and 
Beverly Harrison for their ability to transform my 
understanding about boundaries as areas of connection. 

3. In Audre Lorde, Sister Outsider, (Trumansburg: Crossing 
Press, 1984), 57. 

4. Ibid., 56. 



129 



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APPENDIX A 



19 Roseway Street 
Jamaica Plain, MA 02130 
November 26, 1989 



Dear 



I am writing to a diverse group of women who are involved 
in AIDS work around the country in the hope that you can let 
your lesbian friends and co-workers know about this project. 

I am a lesbian who has been working in AIDS education and 
health services for five years. For the past three years, I 
have also been working toward a degree in feminist liberation 
theology and ministry at the Episcopal Divinity School in 
Cambridge, Massachusetts. My final thesis project for this 
degree addresses the particular issues that arise for lesbians 
who earn a living in an AIDS-related job. In order to focus 
this project, it is limited to those lesbians who have been 
employed doing AIDS work (either full-time or part-time) during 
the last year. 

I am interested in what kinds of work lesbians are doing, 
why they are doing it, what resources or support systems 
lesbians have created, use and need in order to continue doing 
AIDS work, and why lesbians decide to leave their work. 

I hope that this survey will begin to recognize the 
significance of lesbians' contributions in all aspects of AIDS 
work and identify how the experience of AIDS has made an impact 
in the lives of lesbians and their communities. 

* Information gathered in this survey in confidential . No 
identifiers (name, addresses, agency names) will be used in 
relation to specific women in any discussion or publication of 
this project. Results of this survey will be made available to 
all participants who are Interested. 

* I wish to include lesbians with diverse life histories, 
physical abilities, ages and religious, racial, ethnic, class, 
economic and educational backgrounds. Please tell your friends 
and co-workers. 

* If you would like to talk with me, feel free to contact me at 
(617)524-4211 or 19 Roseway St. Jamaica Plain, MA 02130, before 
January 1, 1990. 

I have enclosed a survey for your information or use. If 
you would like to participat in this survey or know someone who 
would, plesae feel free to make copies and distribute them. 
Please return to the completed surveys to me before January 15, 
1990. 

Thank you very much for your support and interest. 

Jennifer L. Walters 



APPENDIX B 



Thank you for participating in this survey of lesbians 
who are employed in AIDS work. I hope that the information 
gathered will contribute to the recognition of the work of 
lesbians in responding to AIDS and to an understanding of issues 
facing lesbians doing this work. 

* Please complete this survey to the best of your 
ability. Feel free to write as much as you like in answer to 
each question and use additional paper if you need it. 

* Remember that no identifying information will be 
used in any discussion or publication of the results of this 
project. This means that your name, address, or agency name 
will never be used. 

* If you would like to talk with me feel free to 
contact me at (617) 524-4211 (collect) or write to me at 
19 Roseway Street, Jamaica Plain, Massachusetts 02130.. 

* This survey takes about 30 - 45 minutes to complete. 
Please answer all the questions as completely as you can. 

**************************** 



PLEASE SEND THIS SURVEY TO ME BY FEBRUARY 1. 1990. 

senfl to t Jennifer waiters 

19 Roseway Street 
Jamaica Plain. MA 02130 



If you 


would 


like to receive 


a summarv of the results of this 


survey, 


Dlease conolete this tear-off section and mail 


it with 


your survey? 

Name 




Phone 




Street 


City 






State ZIP 





SURVEY, PAGE ONE 

1. Tour age: 



2. Tour racial/ethnic identification: 



3. How do yon describe your sexuality or sexual orientation?: 

4. How do you describe your class background?: 



5. Did you graduate fro* high school? TBS HO 

6. Have you attended college? TBS HO 

IP TBS, Please list number of years attended or degrees 
earned: 

7. Please list any licenses or certifications: 



8. Wbxb you raised within a religious tradition? TBS HO 

IP TBS, what tradition? 

9. How do you describe your present spiritual or religious 
experience or affiliations?: 



10. Do you have any disabilities? 



11. Is there any other background information that you would like 
to note?: 

12. Are you doing AIDS- work in your current job? TBS HO 

IP TBS, How long have you had your current job? 

IP HO, How long did you stay at your most recent AIDS- 
related job? when did you leave? 

13. what is [was] your current [most recent] job title/position? 

14. Please describe the following: l) your current [most recent] 
workplace, 2) your current work/job, 3) the community or 
population that you work most closely with (e.g. incarcerated 
HIV-positive women, nursing students, etc.) 



SURVEY, PAGE TWO 
14. Continued: 



15. What percent of your work is [was] related to AIDS? 

16. On the average, bow many hours of AIDS work do [did] you put 
in per week? 

17. Do you have an additional job? TBS HO 

IT TE8: What kind of job? 



How many average hours per week do you put in? 
18. What is your approximate yearly salary from AIDS work? 



19. Are you involved in any volunteer work? TBS HO 

IF TBS, What kind of work? 



How many hours per month do you volunteer? 
How many of those hours are related to AIDS 



20. When (month/year) did you first become involved in work 
related to AIDS (either as a volunteer or employee)? 



21. What first interested you in AIDS work?:. 



22. Did you receive any support (physical, emotional, financial, 
etc.) or encouragement for doing AIDS work at that time? Who 
supported you? Did anyone discourage you? 



23. How has your personal risk of HIT or your antibody status 
affected your work? 



SURVEY, PAGE THREE 

24. What has been Boat influential for yon in deciding to 
continue or to leave work relating to AIDS? 



25. Which of the following are sources of support for you? 

(please rate {"i") the importance of each potential source) 

VERY IMPORTANT SOMEWHAT IMPORTANT MOT IMPORTANT 

LOVER/8 

•FRIENDS: 
Wosen 

Men 

Friends with BTV 

FAMILY 

Family with BTV 



♦WORKPLACE: 
Co-workers 



Supervisor/Boss 
Clients/patients 

RELIGION/SPIRITUALITY 
ANIMALS/PETS 



-PERSONAL HEALTH 
CARE PROVIDER/8 



THERAPIST 
SUPPORT GROUP 
OTHERS (specify) : 



SURVEY, PAOE FOUR 

26. Please rate your level of satisfaction with the following 
potential sources of supports 

VERY SATISFIED SOMEWHAT SATISFIED MOT SATISFIED 

LOVER/8 

FRIENDS 
Women 

Men 

Friends with HIV 

FAMILY 

Family with HIV 

WORKPLACE 
Co-workers 



Supervisor/Boss 
Clients/patients 
RELIGION/SPIRITUALITY 
AMIMALS/PET8 



-PERSONAL HEALTH 
CARE PROVIDER/8 



THERAPIST 
SUPPORT GROUP 
OTHER/ s (specify) : 



27. In general, do you think it is important for lesbians 
working in AIDS to be open about their sexuality at work? 



28. How has your experience of AIDS work influenced your 
relationship to the gay or lesbian communities? 



SURVEY, PAGE FIVE 

29. How has your experience of AIDS work influenced your 
relationship to other groups or communities? 



30. What percent of your co-workers know about your sexuality? 

31. Has your experience of AIDS work had an impact on any of 
your important personal or community relationships? 



32. Has your experience of AIDS work had an influence on your 
spirituality? or vice versa? How? 



32. What do you see yourself doing in five years? 



33. Would you be willing to participate in a follow-up 
interview? TBS HO 

34. Is there anything else you would like to comment on? 



Thank you very much for your contribution to this study. If you 
would like to talk with me, please call 617-524-4211. - Jennifer 






i&K -n